Podcasts about avonex

Die Auswertung vieler Studien weltweit hat gezeigt, das die Basistherapie das beste Mittel gegen das Voranschreiten der MS ist. Du kannst den Beitrag auf meinem Blog Nachlesen: https://ms-perspektive.de/podcast-005-die-basistherapie Der folgende Beitrag ist ein Update zu Folge 5, in der es um die Basistherapie geht, ergänzt um meine Erkenntnisse aus den vergangenen fünf Jahren und meinem Multiple Sklerose Management Studium. Die Bedeutung der Immuntherapie ist heute klarer denn je: Sie kann das Fortschreiten der MS verlangsamen und mögliche Einschränkungen hinauszögern. In diesem Beitrag teile ich aktuelle wissenschaftliche Erkenntnisse, neue Therapieoptionen und meine persönlichen Erfahrungen. Zudem erfährst du, warum eine frühzeitige Basistherapie so wichtig ist und welche Entwicklungen es in der MS-Forschung gibt. Inhaltsverzeichnis Update zur Basistherapie Fortschritte in der Forschung Bedeutung der Präzisionsmedizin Einführung in die Basistherapie Rückblick auf persönliche Erfahrungen Empfehlungen zur sofortigen Therapie Der Weg mit meiner Basistherapie Schwangerschaft und Therapieanpassungen Anpassung der Therapie Buchveröffentlichung und weitere Informationen Medikamente und deren Wirksamkeit Überwinde deine Ängste vor der Basistherapie! Wichtige Erkenntnis zur MS und der neurologischen Reserve Zukunftsaussichten: Hoffnung auf Remyelinisierung Plädoyer für die Basistherapie Zusammenfassung – Die wichtigsten Punkte auf einen Blick: Mein persönliches Fazit: Weiterführende Infos zur Immuntherapie Mein persönliches Fazit: Das war heute mein dringendes Plädoyer für die Basistherapie. Ich wünsche dir, mir und allen anderen da draußen viel Gesundheit, viel Kraft und eine möglichst lange Zeit ohne Einschränkungen.

Erfahre mehr über B-Zell-Depletionen, wie Ocrevus, Kesimpta, Bonspri, Mabthera, Rituxan und Briumvi, für aktive RRMS & SPMS und frühe PPMS. Du kannst den vollständigen Beitrag auf meinem Blog nachlesen: https://ms-perspektive.de/274-b-zell-depletion B-Zell-Depletions-Therapien wie Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan) und Ublituximab (Briumvi) sind zu wichtigen Instrumenten bei der Behandlung von Multipler Sklerose (MS) geworden. Diese Behandlungen zielen speziell auf B-Zellen ab, eine Art von Immunzellen, die am Entzündungsprozess von MS beteiligt sind, und reduzieren diese. B-Zell-Therapien gelten als einige der spezifischsten und wirksamsten verlaufsmodifizierenden Therapien, die heute verfügbar sind, und bieten einen maßgeschneiderten Ansatz zur Verringerung der Krankheitsaktivität und des Fortschreitens der MS. In diesem Beitrag geht es darum, wie diese Therapien innerhalb der MS-Behandlungsoptionen eingeordnet werden und was ihr Zulassungsstatus und ihre Wirksamkeit für verschiedene Patientengruppen bedeuten. Bitte beachte, dass ich hier nur einen Überblick geben kann. Deine Neurologin und MS-Schwester sollten dich ausführlich über die richtige Therapie für dich beraten. Sie kennen deinen allgemeinen Gesundheitszustand und du solltest auch über deine Ziele, Wünsche, Ängste und Vorlieben sprechen, damit diese berücksichtigt werden können. Inhaltsverzeichnis Allgemeine Informationen Wie werden B-Zell-Depletionen - Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) in den Immuntherapien eingeordnet? Wofür sind B-Zell-Depletionen - Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) zugelassen? Wie sieht die Situation für spezielle Patientengruppen aus? Wer sollte Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) vermeiden? Wie wirken Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan) und Ublituximab (Briumvi)? Wie wird es eingenommen? Wie wirksam sind Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi)? Risiken und Nebenwirkungen von Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Rituximab (Mabthera, Rituxan), Ublituximab (Briumvi) Impfungen Quellen Schlussbemerkung Quellen Für die Erstellung des Inhalts habe ich folgende Quellen verwendet: Vorlesung über pädiatrische Multiple Sklerose von Prof. Dr. Jutta Gärtner im Rahmen des Masterstudiengangs Multiple-Sklerose-Management Vorlesung über B-Zell-depletierende Therapien von Prof. Dr. Xavier Montalban im Rahmen des Masterstudiengangs Multiple-Sklerose-Management Qualitätshandbuch der KKNMS zu Ocrelizumab (Ocrevus), Ofatumumab (Kesimpta, Bonspri), Ublituximab (Briumvi) MS-Selfie-Infokarten von Prof. Dr. Gavin Giovannoni Deutschsprachiges Multiple Sklerose und Kinderwunschregister (DMSKW) Deutsche DECIMS-Informationen zu Ocrelizumab --- Vielleicht möchtest du auch einen Blick auf die Beiträge zu den anderen Immuntherapien werfen: #256: Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) #258: Glatirameracetat (Copaxone, Brabio) #261: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #264: Teriflunomid (Aubagio) #266: Natalizumab (Tysabri, Tyruko)  #268: S1P-Modulatoren – Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) #270: Alemtuzumab (Lemtrada, Campath) bei hochaktiver Multipler Sklerose #272: Cladribin (Mavenclad, Leustatin, Litak) bei hochaktiver MS Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

Cladribin (Mavenclad, Leustatin, Litak) ist eine Induktionstherapie, die das Immunsystem unterdrückt und bei hochaktiver MS eingesetzt wird. Hier findest Du den Blogbeitrag zum Nachlesen: https://ms-perspektive.de/272-cladribin Cladribin (Mavenclad, Leustatin, Litak) ist eine Immuntherapie aus dem Bereich der Immunsuppressiva, die zur Behandlung von hochaktiver Multipler Sklerose (MS) eingesetzt wird. Es gehört zur Klasse der verlaufsmodifizierenden Therapien, die das Immunsystem durch Depletion gezielt beeinflussen, um das Fortschreiten der Krankheit zu verhindern. Erfahre mehr über das Prinzip der Induktionstherapien, wie Cladribin funktioniert, wie wirksam es ist und welche potenziellen Risiken damit verbunden sind. Du lernst die Rolle von Cladribin in der MS-Therapie kennen, seine verschiedenen Formen und was PatientInnen wissen sollten, wenn sie diese Behandlung in Betracht ziehen, insbesondere im Hinblick auf Schwangerschaft, Stillen und langfristige Gesundheitsüberwachung. Bitte bedenke, dass ich hier nur einen Überblick geben kann. Dein Neurologe und deine MS-Schwester sollten dich ausführlich über die richtige Therapie für dich beraten. Das liegt daran, dass sie deinen allgemeinen Gesundheitszustand kennen und du auch über deine Ziele, Wünsche, Ängste und Vorlieben sprechen solltest, damit diese berücksichtigt werden können. Inhaltsverzeichnis Allgemeine Informationen Wie wird Cladribin (Mavenclad, Leustatin, Litak) bei den Immuntherapien eingestuft? Wofür ist Cladribin (Mavenclad, Leustatin, Litak) zugelassen? Wie sieht die Situation für spezielle Patientengruppen aus? Wer sollte Cladribin (Mavenclad, Leustatin, Litak) meiden? Wie wirkt Cladribin (Mavenclad, Leustatin, Litak)? Wie wird es eingenommen? Wie wirksam ist Cladribin (Mavenclad, Leustatin, Litak)? Risiken und Nebenwirkungen von Cladribin (Mavenclad, Leustatin, Litak) Impfungen Quellen Schlussbemerkung --- Vielleicht möchtest du auch einen Blick auf die Beiträge zu den anderen Immuntherapien werfen: #256: Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) #258: Glatirameracetat (Copaxone, Brabio) #261: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #264: Teriflunomid (Aubagio) #266: Natalizumab (Tysabri, Tyruko)  #268: S1P-Modulatoren – Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) #270: Alemtuzumab (Lemtrada, Campath) bei hochaktiver Multipler Sklerose Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

Alemtuzumab (Lemtrada) ist eine Induktionstherapie für hochaktive MS, wirkt lange und kann schwere Nebenwirkungen haben. Du kannst den kompletten Beitrag auf meinem Blog nachlesen: https://ms-perspektive.de/270-alemtuzumab Diesmal liegt der Fokus auf Alemtuzumab (Lemtrada, Campath). Es ist eine der hochwirksamen Immuntherapien und ermöglicht bei einer Untergruppe von Patienten mit hochaktiver MS sogar einen Krankheitsstillstand von mehr als fünf Jahren. Aufgrund seiner lang anhaltenden Wirkung auf das Immunsystem und der teilweise schweren Nebenwirkungen wird es relativ sparsam eingesetzt. Es wird als verlaufsmodifizierende Therapie bei aktiver Multipler Sklerose eingesetzt, sowohl bei schubförmigen Formen als auch, nach FDA-Zulassung, bei aktiver SPMS. Alemtuzumab führt aufgrund seines Wirkmechanismus zu einer sofortigen Immunzelldepletion von CD52-positiven Immunzellen (hauptsächlich T-Zellen und B-Zellen). Es wird daher beispielsweise bei Patienten mit massiver Entzündungsaktivität eingesetzt, bei denen das Risiko einer raschen Zunahme der Behinderung besteht. Bitte bedenke, dass ich hier nur einen Überblick geben kann. Dein Neurologe und deine MS-Krankenschwester sollten dich ausführlich über die für dich geeignete Therapie beraten. Denn sie kennen deinen allgemeinen Gesundheitszustand und du solltest auch über deine Ziele, Wünsche, Ängste und Vorlieben sprechen, damit diese berücksichtigt werden können. Inhaltsverzeichnis Allgemeine Informationen Wie wird Alemtuzumab (Lemtrada, Campath) bei den Immuntherapien eingeordnet? Wofür ist Alemtuzumab (Lemtrada, Campath) zugelassen? Wie sieht die Situation für spezielle Patientengruppen aus? Wer sollte Alemtuzumab (Lemtrada, Campath) meiden? Wie wirkt Alemtuzumab (Lemtrada, Campath)? Wie wird es eingenommen? Wie wirksam ist Alemtuzumab (Lemtrada, Campath)? Risiken und Nebenwirkungen von Alemtuzumab (Lemtrada, Campath) Impfungen Quellen Schlussbemerkung Quellen Ich habe die folgenden Quellen verwendet, um den Inhalt zu erstellen: Qualitätshandbuch der deutschen KKNMS zu Alemtuzumab (Lemtrada) MS-Selfie-Infokarten von Prof. Dr. Gavin Giovannoni Deutschsprachiges Multiple Sklerose Kinderwunschregister (DMSKW) Deutsche DECIMS-Informationen zu Alemtuzumab Schlussbemerkung Bitte denke daran, dass es kein Medikament gibt, das allen hilft, sondern dass immer abgewogen werden muss, was für eine bestimmte Person am besten geeignet ist. Auch andere Krankheiten, persönliche Ziele und Vorlieben müssen berücksichtigt werden. Deine Neurologin oder dein Neurologe und die MS-Schwester sind die richtigen Ansprechpartner und können individuelle Empfehlungen aussprechen. Dieser Beitrag dient nur zu Informationszwecken und stellt keine Empfehlung dar. Was der einen Person hilft, muss der anderen nicht helfen. Ich hoffe, dass du gemeinsam mit deinem Neurologen und deiner MS-Schwester schnell die richtige Immuntherapie für dich findest. Und dass du mit MS ein erfülltes, glückliches und selbstbestimmtes Leben führen kannst, unterstützt durch einen gesunden Lebensstil und eine Portion Glück. --- Vielleicht möchtest du auch einen Blick auf die Beiträge zu den anderen Immuntherapien werfen: #256: Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) #258: Glatirameracetat (Copaxone, Brabio) #261: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #264: Teriflunomid (Aubagio) #266: Natalizumab (Tysabri, Tyruko)  #268: S1P-Modulatoren – Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), Siponimod (Mayzent) Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

Erfahre mehr über die S1P-Modulatoren (Gilenya, Zeposia, Ponvory, Mayzent) und deren Einsatz bei aktiver schubförmiger MS und SPMS. Hier findest Du den Beitrag zum Nachlesen und mit allen Bildern: https://ms-perspektive.de/268-s1p-modulatoren Heute geht es um die Gruppe der S1P-Modulatoren, zu denen Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory) und Siponimod (Mayzent) gehören. Die ersten drei, d. h. Gilenya, Zeposia und Ponvory, werden als verlaufsmodifizierende Therapie bei aktiver Multipler Sklerose eingesetzt. Fingolimod (Gilenya) ist sogar für pädiatrische MS zugelassen. Mayzent ist für aktive SPMS zugelassen, wenn der Patient bereits eine von Schüben unabhängige Verschlechterung der MS erfährt, aber auch eine lokalisierte Entzündungsaktivität aufweist. S1P-Modulatoren sind sogenannte Sphingosin-1-Phosphat-Rezeptormodulatoren und verhindern den Austritt von Lymphozyten aus den Lymphknoten. Dadurch wird auch verhindert, dass sie in das zentrale Nervensystem (ZNS) gelangen. Die Untergruppen der S1P-Rezeptoren bestimmen das Nebenwirkungsprofil. Bitte denke daran, dass ich hier nur einen Überblick geben kann. Dein Neurologe und deine MS-Schwester sollten dich ausführlich über die für dich richtige Therapie beraten. Denn sie kennen deinen aktuellen Gesundheitszustand und du solltest auch über deine Ziele, Wünsche, Ängste und Vorlieben sprechen, damit diese berücksichtigt werden können. Inhaltsverzeichnis Allgemeine Informationen Wie werden S1P-Modulatoren - Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory), und Siponimod (Mayzent) - bei den Immuntherapien eingestuft? Wofür sind Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory) und Siponimod (Mayzent) zugelassen? Wie sieht die Situation für spezielle Patientengruppen aus? Wer sollte Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory) und Siponimod (Mayzent) vermeiden? Wie wirken Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory) und Siponimod (Mayzent)? Wie wird es eingenommen? Wie wirksam sind Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory) und Siponimod (Mayzent)? Risiken und Nebenwirkungen von Fingolimod (Gilenya), Ozanimod (Zeposia), Ponesimod (Ponvory) und Siponimod (Mayzent) Impfungen Quellen Schlussbemerkung Quellen Für die Erstellung der Inhalte habe ich die folgenden Quellen verwendet: Vorlesung über S1P-Rezeptor-Modulator von Prof. Dr. Tobias Derfuss im Rahmen des Masterstudiengangs Multiple Sklerose Management Qualitätshandbuch der deutschen KKNMS zu Fingolimod (Gilenya),Ozanimod (Zeposia),Ponesimod (Ponvory)und Siponimod (Mayzent) MS-Selfie Infokarten von Prof. Dr. Gavin Giovannoni Deutschsprachiges Multiple Sklerose und Kinderwunschregister (DMSKW) Informationen aus dem deutschen Interview mit Prof. Dr. Barbara Kornek über pädiatrische MS Deutsche DECIMS-Informationen zu Fingolimod --- Vielleicht möchtest du auch einen Blick auf die Beiträge zu den anderen Immuntherapien werfen: #256: Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) #258: Glatirameracetat (Copaxone, Brabio) #261: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #264: Teriflunomid (Aubagio) #266: Natalizumab (Tysabri, Tyruko) für aktive schubförmig remittierende MS Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

Natalizumab (Tysabri, Tyruko) wird für aktive schubförmig remittierende MS eingesetzt als Infusion oder Spritze und wirkt sehr schnell. Den kompletten Beitrag zum Nachlesen findest Du auf meinem Blog: https://ms-perspektive.de/266-natalizumab Heute geht es um Natalizumab, das unter den Handelsnamen Tysabri und Tyruko bekannt ist. Die Immuntherapie wird bei aktiven, schweren Verläufen von schubförmiger MS eingesetzt. Natalizumab ist ein migrationshemmendes Medikament, das die Einwanderung von T- und B-Zellen in das zentrale Nervensystem verhindert. Bitte denke daran, dass ich hier nur einen Überblick geben kann. Dein Neurologe und deine MS-Schwester sollten dich bei der Wahl der richtigen Therapie ausführlich beraten. Denn sie kennen deinen allgemeinen Gesundheitszustand und du solltest auch über deine Ziele, Wünsche, Ängste und Vorlieben sprechen, damit diese berücksichtigt werden können. Inhaltsverzeichnis Allgemeine Informationen Wie wird Natalizumab (Tysabri, Tyruko) bei den Immuntherapien eingestuft? Wofür ist Natalizumab (Tysabri, Tyruko) zugelassen? Wie sieht die Situation für spezielle Patientengruppen aus? Wer sollte Natalizumab meiden? Wie wirkt Natalizumab? Wie wird es eingenommen? Wie wirksam ist Natalizumab (Tysabri, Tyruko)? Risiken und Nebenwirkungen von Natalizumab (Tysabri, Tyruko) Impfungen Quellen Schlussbemerkung Quellen Für die Erstellung der Inhalte habe ich die folgenden Quellen verwendet: Vorlesung zu Natalizumab von Prof. Dr. Thomas Berger im Rahmen des Masterstudiengangs Multiple Sklerose Management Qualitätshandbuch der deutschen KKNMS zu Natalizumab (Tysabri, Tyruko) MS-Selfie Infokarten von Prof. Dr. Gavin Giovannoni Deutsches Multiple Sklerose- und Kinderwunsch-Register (DMSKW) Informationen aus dem deutschen Interview mit Prof. Dr. Barbara Kornek über pädiatrische MS Deutsche DECIMS-Informationen zu Natalizumab --- Vielleicht möchtest du auch einen Blick auf die Beiträge zu den anderen Immuntherapien werfen: #256: Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) #258: Glatirameracetat (Copaxone, Brabio) #261: Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) #264: Teriflunomid (Aubagio) Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

Get ready for an insightful conversation as host Rahul Chaturvedi connects with John Alam, CEO of CervoMed, to uncover the revolutionary advancements transforming dementia treatment, with a spotlight on Dementia with Lewy Bodies (DLB). John shares his remarkable journey from practicing medicine to leading cutting-edge biotech innovations, shedding light on the bold breakthroughs in neurodegenerative research and the intense, high-stakes world of clinical trials. This episode reveals how CervoMed is not just advancing dementia care but redefining it, proving that resilience and bold thinking are the keys to success in biotech. Biography: John Alam serves as the Chief Executive Officer at CervoMed, co-founding the company (formerly known as EIP Pharma) in 2014. John is an industry leader in translational medicine with over 30 years of experience creating value to help build companies through clinical development success. Until May 2014, he was therapeutic area head for diseases of aging at Sanofi, where he led all discovery and development activities directed at Alzheimer's disease, as well as a number of other age-related diseases including sarcopenia/frailty, osteoarthritis, chronic pain and many others. From 1997 to 2008, he held positions of increasing responsibility at Vertex Pharmaceuticals, including Chief Medical Officer and Executive Vice President, Medicines Development. At Vertex, he played major roles in the development of novel innovative medicines for HIV, Hepatitis C and Cystic Fibrosis. Prior to Vertex, Alam led clinical development of Avonex (interferon beta-1a) for multiple sclerosis at Biogen from 1991 to 1997. John is a member of the board of directors of the Alliance for Aging Research (AAR), a Washington, D.C. based non-profit organization dedicated to promoting innovation to address the healthcare needs of older Americans. He received a MD from Northwestern University School of Medicine and a BS in Chemical Engineering from the Massachusetts Institute of Technology. In addition, he completed an internal medicine residency at Brigham and Women's Hospital and a post-doctoral fellowship at Dana-Farber Cancer Institute.

Teriflunomid (Aubagio) ist als Immuntherapie für Patienten mit milder bis moderater schubförmiger MS ab 10 Jahren zugelassen. Den vollständigen Artikel zum Nachlesen findest Du auf meinem Blog: https://ms-perspektive.de/264-teriflunomid Diesmal geht es um Teriflunomid, das unter dem Handelsnamen Aubagio bekannt ist. Die Immuntherapie wird bei leichten bis moderaten Verläufen von schubförmiger MS eingesetzt. Teriflunomid hat einen breiteren Wirkmechanismus und gehört zu den immunmodulierenden Medikamenten. Bitte denke daran, dass ich hier nur einen Überblick geben kann. Wende dich an deinen Neurologen und deine MS-Schwester, um dich ausführlich über die Wahl der richtigen Therapie für dich beraten zu lassen. Denn es sollte dein kompletter Gesundheitszustand bekannt sein sowie deine Ziele, Wünsche, Ängste und Vorlieben. Inhaltsverzeichnis Allgemeine Informationen Wie wird Teriflunomid (Aubagio und Generika) bei den Immuntherapien eingestuft? Wofür ist Teriflunomid (Aubagio) zugelassen? Wie sieht die Situation für spezielle Patientengruppen aus? Wer sollte Teriflunomid meiden? Wie wirkt Teriflunomid? Wie wird es eingenommen? Wie wirksam ist Teriflunomid (Aubagio und Generika)? Risiken und Nebenwirkungen von Teriflunomid (Aubagio und Generika) Impfungen Quellen Schlussbemerkung Quellen Für die Erstellung des Inhalts habe ich die folgenden Quellen verwendet: Qualitätshandbuch der KKNMS zu Teriflunomid (Aubagio) MS-Selfie Infokarten von Prof. Dr. Gavin Giovannoni Deutsches Multiple Sklerose- und Kinderwunschregister (DMSKW) Informationen aus dem deutschen Interview mit Prof. Dr. Barbara Kornek zur pädiatrischen MS DMSG-Informationen zu Teriflunomid DECIMS-Informationen über Teriflunomid Schlussbemerkung Bitte denke daran, dass es nicht das eine gute Medikament gibt, das allen hilft, sondern dass immer abgewogen werden muss, was für die jeweilige Person am besten geeignet ist. Auch andere Krankheiten, persönliche Ziele und Vorlieben müssen berücksichtigt werden. Dein Neurologe und die MS-Schwester sind die richtigen Ansprechpartner und können individuelle Empfehlungen aussprechen. Dieser Artikel dient nur zu Informationszwecken und stellt keine Empfehlung dar. Was dem einen hilft, muss dem anderen nicht helfen. Ich hoffe, dass du zusammen mit deinem Neurologen und deiner MS-Schwester schnell die richtige Immuntherapie für dich finden wirst. Und dass du ein erfülltes, glückliches und selbstbestimmtes Leben mit MS führen kannst, unterstützt durch einen gesunden Lebensstil und eine Portion Glück. --- Vielleicht möchtest du auch einen Blick auf die Beiträge zu den anderen Immuntherapien werfen: Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) Glatirameracetat (Copaxone, Brabio) Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif) Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

Interferon-beta wie Avonex, Betaferon, Extavia, Plegridy, Rebif und Generika können für milde und moderate Verläufe der MS eingesetzt werden. Den vollständigen Beitrag zum Nachlese findest Du auf meinem Blog: https://ms-perspektive.de/261-interferone Im heutigen Artikel stelle ich Interferon-beta vor, das mehrere Wirkstoffe enthält und unter den Namen Avonex, Betaferon, Extavia, Plegridy, Rebif oder anderen Handelsnamen bekannt ist. Sie alle sind zugelassene verlaufsmodifizierende Medikamente für die schubförmige MS. Wie Glatirameracetat und die Fumarate, die bereits vorgestellt wurden, haben Interferone einen breiteren Wirkmechanismus. Im Folgenden werde ich versuchen, einen guten Überblick zu geben, ohne auf alle Details einzugehen. Und wie immer gilt: Lass dich von MS-Spezialisten beraten, die deine individuelle Situation, deine Wünsche, deine Ängste und deinen allgemeinen Gesundheitszustand kennen. Inhaltsverzeichnis Allgemeine Informationen Wie wird Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif und Generika) innerhalb der Immuntherapien eingestuft? Wofür ist Interferon-beta zugelassen? Wie sieht die Situation für spezielle Patientengruppen aus? Wer sollte Interferon-beta vermeiden? Wie wirkt Interferon-beta? Wie wird es eingenommen? Wie wirksam ist Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif und Generika)? Risiken und Nebenwirkungen von Interferon-beta (Avonex, Betaferon, Extavia, Plegridy, Rebif und Generika) Impfungen Quellen Schlussbemerkung Quellen Ich habe die folgenden Quellen für die Erstellung des Inhalts verwendet: Qualitätshandbuch der KKNMS zu Interferon-beta MS-Selfie Infokarten von Prof. Dr. Gavin Giovannoni Deutsches Multiple Sklerose- und Kinderwunsch-Register (DMSKW) Informationen aus dem Interview mit Prof. Dr. Barbara Kornek zur pädiatrischen MS DMSG-Informationen über Interferon-beta DECIMS-Informationen über Interferon-beta Schlussbemerkung Bitte denke daran, dass es nicht das eine gute Medikament gibt, das allen hilft, sondern dass immer abgewogen werden muss, was für die jeweilige Person am besten geeignet ist. Auch andere Krankheiten, persönliche Ziele und Vorlieben müssen berücksichtigt werden. Dein Neurologe und die MS-Schwester sind die richtigen Ansprechpartner und können individuelle Empfehlungen aussprechen. Dieser Artikel dient nur zu Informationszwecken und stellt keine Empfehlung dar. Was dem einen hilft, ist für den anderen vielleicht wirkungslos. Ich hoffe, dass du zusammen mit deinem Neurologen und deiner MS-Schwester schnell die richtige Immuntherapie für dich finden wirst. Und dass du ein erfülltes, glückliches und selbstbestimmtes Leben mit MS führen kannst, unterstützt durch einen gesunden Lebensstil und eine Portion Glück. --- Vielleicht möchtest du auch einen Blick auf die Beiträge zu den anderen Immuntherapien werfen: Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) Glatirameracetat (Copaxone, Clift) Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

If you've listened to this podcast before, you already know that we avoid hype, and we stick to talking about evidence-based science. So, let me say right up front -- today, the cause of multiple sclerosis is unknown. However, a research team has identified a bacterial toxin that may prove to be the cause of MS onset as well as MS relapses. Joining me for an exclusive conversation about this discovery is Dr. Timothy Vartanian, who leads the team that made the discovery, and Dr. Richard Rudick, whose career has focused on experimental therapeutics for MS, playing a key role in the development of both Avonex and Tysabri. We're also talking about a stem cell therapy called MSC-NP that, in a Phase 1 clinical trial, delivered positive outcomes among people living with progressive MS. We'll tell you about a study that demonstrated why EDSS alone does not accurately define an individual's MS journey. We're sharing news from the International Progressive MS Alliance about a new research pipeline that will focus on improving well-being for people living with progressive MS. And we'll tell you where you can catch a replay of the International Progressive MS Alliance's latest webcast, Developing Treatments to End MS Progression. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Is this the cause of MS?  :22 STUDY: MSC:NP, a stem cell therapy for MS, delivers a positive outcome among people living with progressive MS  1:33 STUDY: Does EDSS tell the whole story of your MS status?   5:03 The International Progressive MS Alliance funds a research pipeline focused on improving well-being among people living with progressive MS  8:42 Webcast Replay: Developing Treatments to End MS Progression   10:24 Dr. Richard Rudick and Dr. Timothy Vartanian discuss a new discovery that may lead scientists to the cause of MS   11:36 Share this episode  29:25 Have you downloaded the free RealTalk MS app?  29:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/292 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Epsilon Toxin-Producing Clostridium Perfringens Colonize the MS Gut and Epsilon Toxin Overcomes Immune Privilege https://www.jci.org/articles/view/163239 STUDY: Mesenchymal Stem Cell-Derived Neural Progenitors Attenuate Proinflammatory Microglial Activation Via Paracine Mechanisms https://futuremedicine.com/doi/10.2217/rme-2023-0005 STUDY: Cognitive Impairment, Fatigue and Depression in Multiple Sclerosis: Is There a Difference Between Benign and Non-Benign MS? https://msard-journal.com/article/S2211-0348(23)00134-7/fulltext#%20 International Progressive MS Alliance: Well-Being in Multiple Sclerosis Research Funding Opportunity https://progressivemsalliance.org/2023/03/15/well-being-in-multiple-sclerosis-research-funding-opportunity Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance https://journals.sagepub.com/doi/pdf/10.1177/1352458521999970 Webcast Replay: Developing Treatments to End MS Progression https://www.facebook.com/watch/live/?ref=watch permalink&v=748824966910470 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 292 Guests: Dr. Richard Rudick and Dr. Timothy Vartanian Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Welcome to Living Well with MS. In this episode, Geoff meets with Kathy Chester, a certified fitness trainer and podcaster with MS.   Keep reading for the key episode takeaways and Kathy's bio.  Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you're new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.  Bio:  Kathy Chester hosts the Move it or Lose it Podcast and leads Women Who Disrupt MS, a support group facilitated through the Multiple Sclerosis Foundation (MSF). She is the owner and lead trainer of Disrupt Fitness Gym.  Fitness has always played a big role in her life. She became an aerobics and boot camp coach and went on to manage various studios. In 2015, she established Disrupt Fitness Gym: a program combining circuit and interval training to create the most efficient workout.  Kathy was diagnosed with Multiple Sclerosis more than 20 years ago. Her MS symptoms began with numb hands and feet, migraines, and cognitive issues. The DMT's and MS treatments she has tried include Avonex, steroids, chemotherapy, Tysabri, and now, Ocrevus. Taking these medications further confirmed her belief that movement and exercise is crucial for optimal health, strength, and mobility.  Her expertise has allowed her to train people with MS all over the world. She developed a new program called DMAT (Disrupt Move and Transform). DMAT targets joints and muscles to slow down advancement of the disease. The program is based on a one-on-one or group session. Both standing and seated moves are demonstrated and trained in real-time. The results are increased strength and confidence in everyday movements which leads to more independence, and therefore, a better quality of life.  Selected Key Takeaways  Understanding exercise to improve MS symptoms  As the MS changed, and as I grew in my knowledge and more certifications, then I was able to understand what moves needed to be done to strengthen our bodies, our legs, the foot drop, keeping the MS hug away, and things like that. So I started working with the MS and the autoimmune world.  The benefits of live exercise classes – giving feedback I also do it [exercise classes] via Zoom, where there could be seven to 10 people, and I'm showing seated moves and standing moves. I'm able to watch and say 'Hold on. Stop that. Let's do this instead.' So I can watch [and] ask, 'Is it cool enough where you are? Do you have water?' And I think that's a personal touch that I'm able to give.  Producing a podcast   I wanted to do a podcast for a long time. The gym just took so much of me. I listened to several different podcasts for years and tried to get my [own] idea of what I wanted it to be. I decided I wanted to have guests on with autoimmune diseases, a lot of them have MS. And then to get something that is inspirational, something that they do, and then have a doctor come on and really talk about the issue.  Related Links:  Try an Overcoming MS exercise video  Find out more about Kathy's Disrupt Move and Transform exercise program   Listen to Kathy's podcast Move It or Lose It   Don't miss out:  Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favourite podcast listening app. If you like Living Well with MS, please leave a 5-star review on Apple Podcasts or wherever you tune into the show. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.  Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS.  If you enjoy this podcast and want to support the ongoing work of Overcoming MS, you can leave a donation here. 

Biogen has agreed to pay $900 million to resolve allegations that it violated federal law by paying kickbacks to doctors to persuade them to prescribe its multiple sclerosis drugs, federal prosecutors said. The agreement settled a whistleblower lawsuit brought by former Biogen employee Michael Bawduniak, according to a statement from the office of U.S. attorney for Massachusetts, Rachael Rollins. Under the terms of the settlement, Biogen will pay more than $843 million to the federal government and more than $56 million to 15 states for overbilling Medicare and Medicaid insurance programs. Bawduniak will receive a portion of the federal recovery. The Cambridge, Massachusetts-based pharmaceutical company in a statement said it settled so it can focus on “our patients and strategic priorities” and said the settlement does not include an admission of liability. “Biogen believes its intent and conduct was at all times lawful and appropriate and Biogen denies all allegations raised in this case,” the company's statement said. The lawsuit alleged that from January 2009 through March 2014, Biogen paid physicians speaking fees, consulting fees and bought them meals that were actually kickbacks, to get them to prescribe Avonex, Tysabri and Tecfidera in violation of the Anti-Kickback Statute. “We thank Mr. Bawduniak for uncovering this behavior and bringing it to light,” Rollins said. “This matter is an important example of the vital role that whistleblowers and their attorneys can play in protecting our nation's public health care programs.” This article was provided by The Associated Press.

Trisha Bordelon is a patient advocate and active participant with the PatientsLikeMe organization. Trisha talks about her journey from when the doctors first diagnosed multiple sclerosis through her attempts to find an effective medication.  Along the way, she discovered some genetic and environmental factors in developing this disease.  She also found a community of patients and advocates on PatientsLikeMe, where she found guidance and where she shares resources and advocacy support. Trisha explains, "I found PatientsLikeMe just by surfing the internet, and I didn't want somebody else to go through what I went through when I was first diagnosed. My doctor, when I was diagnosed with MS, handed me two brochures. One was for Copaxone, and the other one was for, I believe, Avonex. And he said, "Take these home, take a look at them, come back next week, and we'll decide which medicine you're going to start on." I didn't know anything about MS, in my mind's eye, since I had a relative that had it, I'm thinking, "Oh my gosh, I'm going to end up in a wheelchair within six months. I won't be to work anymore. My life as I know it is over." I want to spare somebody else going through that agony." "I stayed off work from 2017 to 2021 and then went back to work full-time for one of the hospitals. They were so short-staffed and could not get enough people that they were reaching out to people that might have a disability or might have a problem. I did not try to hide my MS from them, but I also didn't volunteer it. I put down that I had been formally on disability, and I told my boss that I did have some limitations, but no one ever asked, so I did not disclose them." @PatientsLikeMe  #MultipleSclerosis #MS #ChronicKidneyDisease #PatientAdvocacy #ChronicIllness PatientsLikeMe.com Download the transcript here  

Trisha Bordelon is a patient advocate and active participant with the PatientsLikeMe organization. Trisha talks about her journey from when the doctors first diagnosed multiple sclerosis through her attempts to find an effective medication.  Along the way, she discovered some genetic and environmental factors in developing this disease.  She also found a community of patients and advocates on PatientsLikeMe, where she found guidance and where she shares resources and advocacy support. Trisha explains, "I found PatientsLikeMe just by surfing the internet, and I didn't want somebody else to go through what I went through when I was first diagnosed. My doctor, when I was diagnosed with MS, handed me two brochures. One was for Copaxone, and the other one was for, I believe, Avonex. And he said, "Take these home, take a look at them, come back next week, and we'll decide which medicine you're going to start on." I didn't know anything about MS, in my mind's eye, since I had a relative that had it, I'm thinking, "Oh my gosh, I'm going to end up in a wheelchair within six months. I won't be to work anymore. My life as I know it is over." I want to spare somebody else going through that agony." "I stayed off work from 2017 to 2021 and then went back to work full-time for one of the hospitals. They were so short-staffed and could not get enough people that they were reaching out to people that might have a disability or might have a problem. I did not try to hide my MS from them, but I also didn't volunteer it. I put down that I had been formally on disability, and I told my boss that I did have some limitations, but no one ever asked, so I did not disclose them." @PatientsLikeMe  #MultipleSclerosis #MS #ChronicKidneyDisease #PatientAdvocacy #ChronicIllness PatientsLikeMe.com Listen to the podcast here  

In Folge #125 interviewe ich MS-Patient Didi, der ehrenamtlich sehr aktiv ist. Er erhielt seine Diagnose 1997 mit der Ansage, dass er wohl bald Rente beantragen muss und das mit Mitte 20. Das traf ihn wie ein Vorschlaghammer mitten ins Gesicht und Herz. Denn er war und ist bis heute Eisenbahner aus voller Überzeugung und mit viel Herzblut. Wir haben uns darüber unterhalten , wie er aus dem Tief wieder herausgefunden hat, wie sein Umgang mit der Erkrankung und den Begleiterscheinungen ist, welchen großen Wunsch er gern verwirklichen will und was ihm Freude im Leben bereitet. Ein sehr aktiver Mann, der stets viel unterwegs ist, sich für andere engagiert und aus all seinen Aktivitäten Kraft und Zufriedenheit schöpft. Hier geht es zum Blogbeitrag: https://ms-perspektive.de/interview-mit-ms-patient-ehrenamtler-und-eisenbahner-dietmar-schneider-alias-didi Vorstellung Ich bin ehrenamtlich sehr aktiv bei der DMSG Thüringen, außerdem Vater von zwei Kindern und großer Eisenbahnfan. Mich interessiert alles im Zusammenhang mit Fotografie. Und ich setze mich aktiv für die Barrierefreiheit in Gera ein. Diagnose und aktueller Status Seit wann hast du die Diagnose und welches Symptom war der Anlass dafür? Die erhielt ich Ende 1996, als ich früh morgens nur schattenhaft sah. Wie hast Du die Diagnose aufgefasst? Und wie war es für Deine Liebsten? Endlich hatten die regelmäßigen Probleme der letzten 8 Jahre einen Namen! Welche Behandlung wurde Dir zu Beginn der Diagnose empfohlen und bist Du der Empfehlung gefolgt? Nach dem 3. Schub seit der Diagnose im Juli 1997 bekam ich Avonex, ein Interferon-beta 1a. Das nahm ich auch 11 Jahre lang. Hast Du im Laufe der Zeit Erfahrungen mit anderen verlaufsmodifizierenden Therapien gemacht? Nein. Warst Du mal bei einer Reha wegen der MS oder nutzt Du symptomatische Therapieangebote im Alltag? Wenn ja, wie zufrieden bist Du damit? Beides, sowohl Reha wie auch symptomatische Therapie. Ich finde beides auch sehr wichtig. Bei der Reha sieht man andere Dinge, die man möglicherweise noch verbessern kann, und beginnt damit. Daheim in der Physiotherapie kann man dies weiter ausbauen und festigen. Wie versuchst Du, den Verlauf der MS Einfluss zu beeinflussen? In erster Linie das zu machen, was mir Spaß macht und Kraft gibt. Besonders nach stressigen Situationen hole ich einfach meine Kamera raus, um so komplett abzuschalten. Dieses aktive entspannen, ist mir lieber als Daheim ganz langsam runter zufahren. Außerdem esse ich weniger Schweinefleisch, dafür aber mehr Fisch und Geflügel. Ansonsten genieße ich alles, aber in Maßen statt in Massen. Tipps Was war Dein tiefster Tiefpunkt mit der MS und wie hast Du Dich wieder empor gekämpft? m zweiten Satz nach der Diagnose gesagt zu bekommen: “Machen sie sich mal langsam damit vertraut Rente zu beantragen!” Dies brachte mich in ein Loch, aus dem ich über viele Jahre nicht mehr rauskam. Mehr oder weniger tief war ich drin. Nicht mehr bei der Eisenbahn arbeiten zu dürfen und mit 29 Jahren in Rente zu gehen. Um wieder herauszukommen, habe ich mich bei so manchem Projekt und Verein ehrenamtlich beschäftigt. Davon ist mir von Anfang an bis heute die DMSG Thüringen und die Selbsthilfegruppe geblieben. Im Eisenbahnverein bin ich erst seit 2009. Seitdem und auch bei den Ehrenamtlichen in der DMSG Thüringen habe ich durch das, was ich erreiche und bewirke, innere Zufriedenheit erlangt. Auch wenn ich ab und an geschafft bin, bin ich am nächsten Tag wieder so fit wie zuvor. Was machst du, wenn du Symptome der MS verspürst? Da bin ich wohl sicher kein Vorbild für andere. Schauen wie ich das Problem oder die Einschränkung überbrücke. Suche nach einem Weg damit zu leben und wenn dies klappt, ist es auch schnell vergessen. Stört es mich doch, wird dann im äußersten Notfall doch mal in der MS-Ambulanz oder bei der Hausärztin angerufen. Leben, Beruf, Freizeit In welcher Lebensphase hast Du die MS-Diagnose erhalten und hat es deine Pläne über den Haufen geworfen? Es gibt Menschen die bei der Eisenbahn arbeiten und es gibt Eisenbahner. Ich war und bin Eisenbahner (in Ruhestand). War zu der Zeit mehr auf der Arbeit als Daheim oder irgendwo anders. Puh und nun? Welche Rolle spielt die MS in Deinem Leben und wie hat und wirkt sie sich auf Deine Familie, Deinen Beruf und Deine Freizeitgestaltung aus? Die Einschränkungen durch die MS spüre ich mal mehr mal weniger. Doch dies gehört zum Alltag. Durch das Ehrenamt werde ich auch an die MS erinnert. Doch ansonsten suche ich nicht nach Problemen, sondern nach Lösungen. Aber Radfahren und so manche Gebirgstour, die ich gerne machen würde, gehen halt nicht. Dennoch bemühe ich mich, vieles mit dem Rollstuhl zu machen. Zum Beispiel mit dem Aktiv-Rollstuhl an die Eisenbahnstrecke zu fahren und mir solche Fotostellen zu suchen, die machbar sind. Ich konzentriere mich lieber auf die Lösungen, statt die Probleme in den Mittelpunkt zu stellen. So sehe ich vieles gar nicht nicht bewusst, was eigentlich anders ist. Was meine Kinder angeht, die kennen mich nur so und für sie ist das die Normalität. Als sie noch klein waren, kannten meine Kinder wahrscheinlich jeden öffentlichen Spielplatz der Stadt. Da ich sie, auf meinem Schoß sitzend, überall rumgefahren habe. Ich rollte aber auch über manchen Weg querfeldein, wenn ich die Chance sah, irgendwie vorwärtszukommen. Zurück wäre ich auf so manchem Weg wohl nicht mehr gekommen. Wir hatten aber immer unseren Spaß und das war mir wichtig. Ansonsten nimmt meine Verwandtschaft die MS und deren Folgen als gegeben hin. Auch sie sind eher pragmatisch und versuchen das beste draus zu machen. Wie engagierst Du Dich ehrenamtlich bei der DMSG Thüringen und kannst Du aus der Hilfe für andere Kraft und Freude für Dich selbst mitnehmen? Ich bin in der Selbsthilfegruppe aktiv. Den MS-Stammtisch in Gera habe ich mit gegründet, die Vorbereitung mitgemacht und leite jetzt beide MS-Stammtische in Gera. Ich telefoniere oft mit anderen MS`lern, besonders dann wenn die mit der Erkrankung oder deren Folgen (noch) nicht umgehen können. Da gebe ich auch oft Tipps. Wobei diese oft mehr aus der Erfahrung als auch meinem Wissen durch Seminare und oder Angelesenes kommen. Seit wann bist Du Eisenbahnfan und welche Aktivitäten sind damit verbunden? Seit wann? Seit ich denken kann. Ich bin circa 40 Meter neben einem Bahnhof aufgewachsen und groß geworden. War sehr oft da, um die verschiedenen Loks und deren Personal zu sehen. Aber auch um dem dortigen Fahrdienstleiter zuzuschauen, sowie (was zu DDR-Zeiten absolut verboten war) Eisenbahnalltag zu fotografieren. Ich erlernte den Beruf Lokschlosser und arbeitete unter anderem als solcher. Lokführer konnte ich nicht werden, da meine Sehstärke nicht ausreichte. Die Grenze lag bei +/- 1 Dioptrien und ich darüber. Seit 2009 bin ich im Eisenbahnverein aktiv. Dort kümmere ich mich unter anderem seit Juni 2011 intensiv um den Erhalt einer Diesellok. Ich mache aber auch alle sonstigen Arbeiten, die anfallen und die trotz Einschränkung irgendwie machbar sind. Dabei achte ich nicht auf mich selbst, das übernehmen zum Glück andere Vereinsmitglieder. Wie stark bist Du in die Eisenbahner-Community eingebunden und wie viel Zeit widmest Du diesem Hobby in der Woche? Oh schwere oder anders gesehen leichte Frage. Da Kinder und Verwandtschaft weit oben stehen, kommen die zuerst dran. Dann folgen die DMSG Thüringen und die MS`ler sowie mein Engagement für ein barrierefreies Gera (mit allem drum und dran). Zwei- bis dreimal mal pro Woche bin ich vor Ort im Vereinsgelände, solange meine Kraft mit zwei Pausen reicht. Ansonsten führe ich auch in so manch freier Minute daheim Recherchen für den Verein durch. Fotografie und Eisenbahn möchte ich auch nicht ganz voneinander trennen. Manchen Zügen reise ich nach. Darüber hinaus bastle ich in meiner Freizeit noch an der Modelleisenbahn. Kurz gesagt, Langeweile kenne ich nicht. Aber wer denkt, dass mir das alles zu viel wird, irrt. Der Kontakt zu den anderen Ehrenamtlichen bereitet mir Freude, ob in der DMSG Thüringen oder hier in Gera. Es gleicht sich alles schön aus und durch die gute Mischung habe ich für das gerade aktuelle reichlich Kraft und einen freien Kopf. Wünsche und Ziele Gibt es einen großen unerfüllten Wunsch? JA! Ein zwei oder drei (verrückte) Leute finden, die mit mir den begradigten Wirtschaftsweg vom Brocken nach Schierke oder Drei Annen Hohne mit mir mitgehen. Ich selbst würde den Weg mit dem Aktiv-Rollstuhl überwinden. Welche Entwicklung wünschst du Dir im Bereich der MS in den kommenden 5 Jahren? Mehr Gehör und offene Ohren für die sehr vielseitigen Probleme eines MS`lers zu finden. Dies ohne Mitleid, sondern auf einer sachlichen Ebene. Blitzlicht-Runde Was war der beste Ratschlag, den du jemals erhalten hast? Bei großer Hitze, die Pulsgegend an Hand- und Fußknöcheln im Wasser kühlen. Wie lautet dein aktuelles Lebensmotto? Meinem Motto folge ich schon ewig, auch vor der Diagnose. Geht nicht, gibt es nicht. Geht schwer, gibt es nur. Mit welcher Person würdest du gern einmal ein Kamingespräch führen und zu welchem Thema? Leider im letzten Jahr verstorben. Norbert Blüm, der einfach gerne diskutiert hat, um Dinge von verschiedenen Seiten zu betrachten. Genau auch aus diesem Grund, gerade ihn. Durfte ihn vor langer zweimal treffen.  Vervollständige den Satz: „Für mich ist die Multiple Sklerose... “ …eine unschöne Herausforderung, die ich angenommen habe.“ Welche Internet-Seite kannst du zum Thema MS empfehlen? Dmsg.de und auch Deine Seite, MS-Perspektive, mit den vielen Ratschlägen. Welches Buch oder Hörbuch, das du kürzlich gelesen hast, kannst du uns empfehlen und worum geht es darin? Zum wiederholten Male gelesen habe ich: “Kurt” 1-4 von Sascha Raubal, erschienen im Machandel Verlag. Die Bücher sind Krimi mit Humor und halten einem den Spiegel vor Augen. Sie sind jedoch nur schwer einzuordnen. Verabschiedung Hast du einen Tipp, den Du Deinem jüngeren Ich geben würdest, für den Zeitpunkt der Diagnose? Mach das, was Dir Spaß macht, und werde selbst aktiv. Möchtest du den Hörerinnen und Hörern noch etwas mit auf dem Weg geben? Nehmt das Leben nicht so ernst, denn lebend kommen wir da eh nicht mehr raus. Das heißt, mit einer gesunden Portion Humor, lässt sich so manchem Hindernis leichter begegnen oder es kann sogar beseitigt werden. Wo findet man dich im Internet? Google+ gibt es leider nicht mehr und seitdem bin ich nur bei Facebook als Dietmar didi Schneider. Sonst habe ich anstelle des alten Google+ noch nichts neues Passendes für mich gefunden.   Vielen Dank, liebe Dana, dass Du Deinen Weg von der Diagnose bis hierher geteilt hast. Ich wünsche Dir und Deiner Schwester ganz viel Erfolg, Dir einen stets milden Verlauf mit der MS und Dir und all den lieben Menschen um Dich herum immer viel Glück und Gesundheit. Bis bald und mach das beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisher interviewten MS-Patienten.

Ritu Kaur is no ordinary woman. She is creative, accomplished, life-loving and, after getting diagnosed with MS, has made it her single-handed mission to educate people about MS to reduce the stigma around it and lessen undiagnosed and misdiagnosed cases. MS is not the same for everyone. Nor does MS define a person; only their courage and strength do. With love and kindness in her heart, Ritu has taken to spreading awareness about MS and building community around the globe to create acceptance of MS among people with MS and their families, friends, colleagues, and society. Through her deft use of social media, Ritu is building a platform where people with MS and their supporter can get counsel and emotional support… where they feel loved, accepted, and confident.   Questions:   Welcome to Living Well with MS, Ritu! I believe your full name is Surjeet. Is Ritu a nickname? There are many thousands of people around the world that know the name Ritu thanks to the work you've undertaken to build a community around the cause of raising MS awareness. First off, can you share a little bit about your personal background and connection to MS? After receiving your diagnosis, what were some of the chief factors that pointed you in the direction of the work you do to raise awareness of MS? Why do you think it's so important for MS awareness to improve? How does what you're doing supplement the work of MS organizations like the MS Society? Where's the gap that you saw from your own personal experience with MS? You've been quoted as saying “through my efforts I am trying to remove the fear about MS and the taboo associated with the disease.” Can you speak to the stigma around MS you've witnessed and how you've decided to confront and overcome it? You've built an amazing global community of over 17k people on Instagram, the link to which can be found in our show notes, and as I understand it you have 121 personal relationships with many of them. Why do you feel community is so important? How do you feel the community you've built has made a difference in the lives of people with MS? You're based in India. What do you see as the specific challenges there in terms of MS awareness and acceptance, and how are you working to address this closer to home? Shifting gears a bit, you have a background in marketing, and I know you've applied some of these skills to creating some pretty amazing awareness campaigns, the links to which can be found in our show notes. How have these made an impact? If all the work you do building community and raising MS awareness isn't enough, you're also giving me a run for the money by being a creator and host of a podcast, 10 Minutes for MS. I suppose that's yet another great way to reach people with your message, but since we're chatting as part of a podcast, what do you think that platform provides you for advancing your cause that others don't? On a personal note, how do you find time to stay healthy and balanced given how much time you dedicate to the cause of MS awareness? Your motto is to “spread awareness with love and happiness”, which is beautiful. But sometimes, and hopefully rarely, you might find yourself suffering the blues. How do you personally cope with that, and what advice would you give to others? Thanks so much for being on our program, Ritu. You are truly an inspiration to the MS community, and the work you've done has already helped transform the MS landscape. On a final note, if you look back 5 or 10 years from now, what is the single greatest change or impact you would have liked to have made with the work you're doing?   Bio:   Since her diagnosis in 2012, Ritu has gone on to create a global community for MS patients and caregivers. Ritu has created a hub for education, awareness and acceptance of MS amongst the PwMS' families, friends, colleagues and society. Through her efforts, she is also trying to remove the fear, social stigma and taboos associated with MS to create acceptance. She believes that anything can be overcome with Love and Positivity and that is her motto: Spread Awareness with Love and Happiness. With the support of her family and using her marketing skills, she has single-handedly taken up this mission of bring a change to the way MS is perceived today around the world.   Links:   Ritu and multiplesclerosis.awareness on Instagram Ritu's story as featured in Rare Revolution Magazine Ritu's YouTube channel Ritu's Facebook page Ritu's podcast, 10 Minutes for MS Check out some of Ritu's global MS awareness campaigns: #BeatMSWith #WeSwitchMS #WorkOutMS #HowMSFeels Some of Ritu's live interviews with doctors on IGTV and MS Warriors: Ingels:MS and Covid 19 Michael Murray:Diet & MS Tom O'Bryan:Gut Health & MS E Stem Cells Therapy:Part 1 , Part 2   Coming up on our next episode:   Pack your listening bags for Surrey, England on the next episode of Living Well with MS Coffee Break #21, premiering August 30, 2021, when we introduce you to entrepreneur and philanthropist Julie Pankhurst. You won't want to miss her fascinating personal story, and hopefully her shared experience with MS and the OMS program will enlighten and inspire you!   Don't miss out:   Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. Don't be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing podcast@overcomingms.org.   S3E40 Transcript Ritu Kaur: A One-Woman MS Awareness Machine   Geoff Allix (1s): Welcome to Living Well with MS, the podcast for Overcoming MS and people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host, Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingMS.org/podcast. If you enjoy the show. Please spread the word about us on your social media channels. That's the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode.   Geoff Allix (44s): Now, without further ado, on with the show. Ritu Kaur is no ordinary woman. She's creative, accomplished, life-loving, and after getting diagnosed with MS, has made it her single-handed mission to educate people about MS to reduce the stigma around it and lessen undiagnosed and misdiagnosed cases. MS is not the same for everyone, nor does MS define a person. Only their courage and strength do. With love and kindness in her heart, Ritu has taken to spreading awareness about MS and building a community around the globe to create acceptance of MS among people with MS and their families, friends, colleagues, and society. Through her adept use of social media, Ritu is building a platform where people with MS and their supporters can get counsel and emotional support, where they feel loved, accepted, and confident.   Geoff Allix (1m 32s): Welcome to Living Well with MS, Ritu.   Ritu Kaur (1m 35s): Thank you so much.   Geoff Allix (1m 36s): I believe your actual name is Surjeet. Is Ritu a nickname?   Ritu Kaur (2m 6s): Yes, Geoff. Ritu is my nickname, but people love this name Ritu. It's just easy to pronounce. They feel that it's more comfortable for people to say Ritu. They feel that closeness to me when they call me Ritu so yes. Surjeet Kaur is my official name, but people call me Ritu as well.   Geoff Allix (2m 25s): Okay. If you see the two names, it's the same person. There are many thousands of people around the world that know the name Ritu, thanks to the work you've undertaken to build a community around the cause of raising MS awareness. First off, could you share a little bit about your personal background and connection to MS?   Ritu Kaur (3m 10s): Thank you so much for this wonderful introduction. When it comes to me, I was diagnosed with MS in December 2012. I got this as a Christmas gift from God. I know that it was given to me for a reason, and the reason was to help people all around the globe. That's why I took up this mission of spreading awareness. Yes, MS was unknown to me, and I was too scared. I did not know if I'll be able to see my birthday coming up the next month in January, but it all passed.   Ritu Kaur (3m 50s): I sailed through everything. I sailed through the storms, through horrible symptoms I had, everything. I believe the support of my family and God's blessing really helped me through that. When I was diagnosed initially, I had symptoms. I had my right-side numbness. The symptoms got so bad that I could not even pick up a spoon to eat. My mom had to feed me with her hands. I had sensitivity over my right side that even with a strand of hair touching my skin, I would scream out in pain.   Ritu Kaur (4m 39s): All these symptoms lasted over three weeks' time and doctors could not diagnose them initially. Then I met the right doctor in Mumbai. He did my MRI and he said, “It looks like MS. We will have to do your lumbar puncture as well.” It was all quick. He did my lumbar puncture; my report came within two to three days. It said I had MS. I spent Christmas celebrating it in the hospital. From the New Year, I started DMDs, which was Avonex. Ever since then, I have been on a mission to spread awareness.   Ritu Kaur (5m 19s): The main thing here was I felt very lucky to know that I was diagnosed with a problem. I know what I had. My sister is a neuro-specialized physiotherapist. She was a valuable help with my complete diagnosis and contacting the doctors. I had guidance but what about the people who do not have people to guide them to the right doctors to meet? They are not in the right city wherein they have such qualified neurologists, especially in India. I also realized that the treatment is so expensive in India.   Ritu Kaur (6m 11s): My one Avonex injection would cost me 10,000 rupees. How many people can afford that? There are people who have a salary of just 10,000 rupees. All those things really touched me. I said, “I have to do something.” One more thing I saw, when I was diagnosed, there were so many friends and colleagues who said, “You should not talk about these kinds of problems to people. Those issues, keep it to yourself.” Some of the people also said, “You should get married immediately because you can't live alone.” I said, “No. Even though I have MS, I want to be independent the way I have always been. Trust me, I will prove to be stronger than I ever was.” I have two challenges here.   Ritu Kaur (6m 57s): I had to prove to myself that I am perfect. I'm fine, there's nothing wrong with me. I also had to face a society who said, “You should keep your identity hidden. You should not tell people that you have MS,” because people see someone with a disease, they feel, “She has a problem. Let's stay away from that person. Maybe I'll get it. Maybe it's contagious. You never know. Maybe you'll have problems getting married. You will not get a guy who would like to marry you in the later years of life so get married immediately.” Why is there so much social stigma? Why is there so much of a misconception? Why don't people come to know that they have MS for years of staying with this disease? If someone has MS, will that person ever know they have MS at the right time? Also, the expensive treatments. It was all, together, running in my mind. That's what inspired me to take up this challenge and do something.   Geoff Allix (7m 34s): How do you think what you do fits with big organizations like MS Society around the world? How is your work different from theirs? Has it supplemented them?   Ritu Kaur (8m 17s): MS Societies are societies. They have lots of contacts. They are politically driven. They are doing their own jobs but I, as an MS patient myself, understand what MS feels like. It's a different game altogether. How I connect to people personally is something maybe the societies cannot give. If you write a message to the MS Society, maybe one of the employees will message you. They will connect you with someone else and the other person. Yes, of course, they have more contact with doctors.   Ritu Kaur (8m 58s): They might be able to help in more detail but what I give it to MS patients personally is precious. Tomorrow, if someone writes a message to me, I have the responsibility to answer them myself, not a second, third, or fourth person. They get answers from me. It's just me here. That is the personal connection, the personal touch, and the language I can give which the other societies do not give. Trust me, when some other patients messaged me, they have a problem and they are in Africa, India, or any other country, even in Pakistan, or any place, I message their respective MS Societies and connect them.   Ritu Kaur (9m 45s): This is a patient in your place, in your area, can you help them with the required doctor, required facility, medical assistance, financial assistance, or anything that they are asking for. Here, I'm a connection between the societies and the patients. Whatever I can give them personally, like mental support, I'd give them. Of course, I know that something is beyond my capability. I can't have a connection with doctors in South Africa. I don't know who to connect with. For that, of course, you must reach out to the societies.   Geoff Allix (10m 4s): You've talked about your relationship as an individual, but you've got a community of over 17,000 people on Instagram. As well as being an individual, do you feel that there's a community between those people?   Ritu Kaur (10m 46s): Yes, of course. There's a strong community between those people as well. What I do is I just provide them with a platform wherein all MS patients can meet and connect with each other. Sometimes, I take Zoom meetings wherein I invite people to join and we have a community forum there. People can discuss their problems, guide each other. That is one way. Otherwise, if someone has a problem, I post it on my page and there are other people answering with some tips they have to that problem. They interact with each other.   Ritu Kaur (11m 35s): The introduction that you see on my page, I think I'm very proud of that. In fact, I know that MS Patients in my community have become such good friends, they have met each other offline, and they are like best of friends. Not just them, it was me also because I'm an MS patient myself. Even I have made friends and families all over the world now. Tomorrow, if I go to the US or UK, anywhere, I know I have a sister there, or maybe I have a best friend. That's the kind of community I have created. You can feel comfortable in that community. You have people who can understand you and love you.   Geoff Allix (11m 52s): You're based in India. What do you see as specific challenges in India in terms of MS awareness and acceptance? Are there things that you can do to address those in your homeland?   Ritu Kaur (12m 36s): Yes, absolutely. When I got the MS initially, I did not know MS. That is the first thing that there is no awareness about MS. When I had visited New York previously, I saw that there were banners and posters about multiple sclerosis in the metros. People could read that there is something known as MS. We do not have a banner or anything like that in India. I have not seen it, at least. The other thing is that the MS Society should shout out and see we are doing MS Walk, MS Marathon. It is also done in India but on a smaller scale. It has not given much of the media limelight.   Ritu Kaur (13m 28s): That is something that should have been here, I feel. Initially, when people are diagnosed with MS, they don't want to talk about MS. They have a lot of fear. Like I said, to me, people are advising, “Get married,” or they were saying, “Keep it to yourself. Don't share the news that you have a problem or a disease.” That's the social stigma that is in India. I think that is the biggest challenge right now, but I'm happy to see that people are now breaking away from that social stigma. When I had started this stage, I started it on Twitter and Facebook initially, and then on Instagram. I saw for so many years, I had not gotten a single follower from India.   Geoff Allix (13m 44s): You've mentioned about fear of a stigma. Is it a fear of a stigma or is there actually taboo? Do you get treated differently in India because of having MS?   Ritu Kaur (14m 24s): Yes, it's a very important question. It is taboo, of course. That's the reason why people don't want to talk about it. They feel, “If I tell someone that I have the disease, they will not hire me.” If I am a working professional, they will say, “She or he is not capable. Tomorrow, something wrong can happen. Why should we take responsibility for that person?” Of course, it's a big taboo. At the same time, the taboo gives rise to fear in a person. Once someone is diagnosed with MS, they don't want to talk about it because they don't want to be treated differently.   Ritu Kaur (15m 7s): That's the thing. That's why people are scared to disclose that they have MS. When I had started these pages earlier on Twitter and Facebook, and then on Instagram, I did not have any of the Indian followers. Now, I'm very proud to see that I've got so many Indian followers. It really feels good to receive messages from some of the followers saying, “Thank you for being an Indian and raising this kind of awareness because this really gives us a lot of strength that someone, a person like me, is doing this social work.”   Ritu Kaur (16m 10s): This is the kind of strength I am personally giving to the Indian people, which I'm really happy about. In fact, I also do live sessions on my Instagram page, wherein I invite MS Warriors to come and share their stories. I was very happy to see that some of the Indian patients also joined my live Instagram and shared their stories, which earlier, they did not even want to talk about or accept the MS. Yes, India is a different country with lots of cultures and lots of different thoughts and different kinds of perceptions to deal with. I think it's getting quite modern now and people want to talk about the things which are once considered to be taboo. I'm just really proud to be one of them to bring that change to India.   Geoff Allix (16m 30s): Just to change the subject, you've got a background in marketing, and you've applied some of your marketing skills to some pretty amazing awareness campaigns. There are links to all those in the show notes, as well as your social media channels. How do you think those awareness campaigns have made an impact?   Ritu Kaur (17m 13s): Yes, I'm a marketing professional and I have done a lot of video campaigns. This was the aim of spreading awareness in a fun manner. We do see videos wherein someone comes and sees, “MS is bad. MS gives me this kind of problem. I'm having this kind of pain.” We had those kinds of crowdsource videos. What about showing people a different side of MS? “Yes, I have a problem, but you know what? MS can't stop me. I still can do and achieve the dreams that I want to.” That's what my campaigns are mostly about.   Ritu Kaur (17m 56s): My recent campaign was we switched MS, which showed initially that I've got pain in my leg. I've got numbness in my leg, but the next flip of the switch was, I'm running. I'm still running in the marathon. This kind of fun campaign is actually admired. People really liked to participate in it worldwide. I've got an audience from the US, UK, Australia, India, Africa participating in these kinds of campaigns. The other campaign was “Beat MS with a campaign.” It was on the similar lines that I have problems, but do you know what, I beat MS with a proper diet.   Ritu Kaur (18m 36s): I beat MS With proper exercise. I beat MS with just music or just dancing. I think these kinds of campaigns have a very strong meaning. With these kinds of campaigns, I can actually change the perception of how MS is seen now all over the world. It is seen as a serious illness or chronic disease, but it is not seen as MS is there, but it cannot stop and cannot crumble anyone's spirit. The message of all the campaigns is this. It cannot crumble a spirit.   Geoff Allix (19m 1s): As well as all the things you've talked about already, building community and raising awareness, you're also like me, a host of a podcast, 10 Minutes for MS, which is presumably for you and another great way to get your message out to people. What do you think that podcasts provide to advance the cause compared to other media?   Ritu Kaur (19m 45s): I've always been talking about community building and creating awareness. This podcast is not just about awareness but it's also about education. It is about educating people about MS. That's the reason why I've got doctors worldwide talking about different factors of MS. Some doctors are talking about fatigue. The other doctor is talking about exercise. The other is talking about diet, stem cell therapy, or different kinds of treatments available. This is more focused on education. Other podcasts are also there. It is in the MS community. They are also very good podcasts talking about inspiring stories and creating awareness. Mine is totally focused on educating people about MS, which I think is very much required. In fact, I've got feedback from many people that they have learned so much from my podcast. They said, “We don't even hear from the nurses and the doctors.” That's the kind of education I'm providing. The podcast is for education and my pages are for awareness and community.   Geoff Allix (20m 19s): So, on the personal note, how do you personally find time to stay healthy and balance? Given how much time do you spend on your MS awareness work?   Ritu Kaur (21m 11s): They say you should practice what you preach so that's what I follow. When I say that workout is important, no matter what, I have to take time even if it is late at night, even after dinner. If I have to walk, it means I have to walk. I have to clock my timing that yes, I have to definitely do two hours of workout every day, whether it is yoga, strength training, or just walking. It has to be a workout. I have disciplined myself that way. My health is my priority, so I have to take care of it. My workout schedule is very much strict as is my diet. I'm an Indian.   Ritu Kaur (21m 52s): They say that gluten is very much of a staple diet for us because we have rotis, chapatis, parathas. Trust me, I love those. It was difficult for me to leave aside gluten and wheat, but where there is a will, there's a way. I managed to do that. For example, I replaced my gluten, my wheat with quinoa flour. We have alternatives available. Only if you want to really look for it, you will. That's how I have done. I have when taking care of my diet, my exercise, my sleep pattern. It has to be eight to 10 hours of sleep definitely.   Ritu Kaur (22m 41s): Like I said, I give priority to my health. I stay away from stress as much I can. I do whatever makes me happy. If something is giving me stress or burden, I just want to quit that thing. I'm not a quitter, I'm a fighter I know, but my health is my priority. I don't want to disturb it in any way. Other than that, I am still on DMDs. Like I said, my first DMD prescribed by the doctor was Avonex. I'm still on that. It is a weekly injection that I had to take myself so I'm following that.   Geoff Allix (23m 3s): You mentioned about avoiding stress but is there anything specific that you do day-to-day to keep your mental health? There's definitely a mental side to MS as well and there's a tendency for people to get depressed or feel blue. Do you do anything the day-to-day to help with that side of things?   Ritu Kaur (23m 42s): I just feel that my positive outlook has really helped me through this journey. I believe in looking at things from a positive aspect. If something is going wrong, I see it as wrong, but if I look at the other side of the picture, maybe it's something for good. I just believe in three things. Whatever happens, it's for good. This is one mantra. The second is if God is putting you in a trouble, then it's his responsibility to take care of all of it so you don't have to worry about it. He will take care of you. You are his child, so you don't worry about anything. The third thing is, of course, my family environment is really good.   Ritu Kaur (24m 22s): I have a very supportive family. My parents, my siblings, my husband, everybody's very supportive. They know how I am. They, themselves, help me keep my positive spirits alive. I am today, a 36-year-old lady, a woman. If you see me at home, I don't behave like anybody older than 20. I still dance and jump around in my house like I'm 20 years old. Keep yourself young with all the positive ways that you can. Meditation is really important, I have to say that. I do 45 minutes of exercises including meditations every day. It not only calms the mind, but it will also help to gain a lot of patience and it really helps you cool down your mind. That is one thing which I think a person should follow. So, keep yourself young or by all the positive ways that we can.   Geoff Allix (25m 17s): Well, thank you so much for being on our program, Ritu. You are truly an inspiration to the MS community. The work that you've done has helped transform the MS landscape. On a final note, if you looked forward five or 10 years into the future, what would be the single greatest change or impact you would have liked to have made with the work you're doing?   Ritu Kaur (25m 57s): I have already started seeing the change. Like I said, I am seeing the changes that people have started accepting this as a disease that cannot stop and crumble them. I'm changing the perception of how it is seen in India. Now, people are talking about MS as a disease in India. I really pray to God that someday, this taboo just breaks away. There's no more there. There is no problem for MS patients to find jobs. There is no problem for MS patients to have partners in their life. There is no problem for MS patients to live confidently because MS is not a punishment. It is definitely not your fault so why shy away or be scared? Live confidently. I think I'm getting closer to this, and I really want to see a 100% change or total turnaround from what it is right now in the next five to 10 years.   Geoff Allix (26m 34s): Thank you very much for joining us.   Ritu Kaur (26m 37s): Thank you so much, Geoff, for your wonderful time.   Geoff Allix (27m 16s): Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at www.overcomingMS.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingMS.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by Grant from the Happy Charitable Trust. If you'd to support the Overcoming MS Charity and help keep our podcast advertising free, you can donate online at www.overcomingMS.org/donate. Thank you for your support. Living Well with MS is produced by Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingMS.org. Thanks again for tuning in and see you next time.

Joining me this week is Brett Drummond, a scientist in Australia who stepped away from his lab to develop an online resource designed to bridge the gap between the MS patient community and the MS research community. The result of his efforts is MSTranslate. We're talking about this excellent curated MS information resource, and Brett even shares some insights into the MS research that he finds particularly exciting.   We're also talking about the research team that used human stem cells to create myelin-producing cells in a lab dish in just 3 weeks.   We'll tell you what a University of Washington Rehabilitation Medicine research team learned when they surveyed people living with MS about their level of distress during the first surge of the COVID-19 pandemic.   Wouldn't it be convenient if MS progression could be measured by analyzing how you type on your smartphone? We'll tell you about the study that asked that question.   We'll also share new discoveries from the Avonex clinical trial that show MS-related brain atrophy can be predicted 10 years before it occurs.   And as we approach Thanksgiving in the U.S., we're sharing the things that we're thankful for this year.   We have a lot to talk about! Are you ready for RealTalk MS??! Being thankful in 2020  :22 Myelin-producing cells created in a lab dish in 3 weeks  5:43 UW Rehabilitation Medicine surveyed people living with MS on their feelings of distress & risk perception in the early phase of the COVID-19 pandemic  6:57 Measuring MS progression by typing on your smartphone   9:06 Study shows neurofilament light chain level at the first MS episode predicts future brain atrophy  10:43 My interview with Brett Drummond  14:54 Share this episode  37:13 Donate to the National MS Society COVID-19 Response Fund  37:34 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/169 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Give RealTalk MS a Rating and Review National MS Society's Ask An MS Expert Video Replay What You Need to Know About Coronavirus (COVID-19) MSTranslate STUDY: Generation of Oligodendrocytes and Establishment of an All-Human Myelinating Platform for Human Pluripotent Stem Cells STUDY: Distress and Risk Perception in People Living With Multiple Sclerosis During the Early Phase of the COVID-19 Pandemic STUDY: Early-Warning Signals for Disease Activity in Patients Diagnosed with Multiple Sclerosis Based on Keystroke Dynamics STUDY: Association of Serum Neurofilament Light Levels with Long-Term Brain Atrophy in Patients With a First Multiple Sclerosis Episode National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 169 Guests: Brett Drummond Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, MSTranslate, RealTalkMS Privacy Policy  

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Multiple Sclerosis News Today columnist, Jenn Powell discusses how Plegridy and Avonex, may be used in women with relapsing multiple sclerosis who are, or are considering becoming, pregnant. Are you interested in learning more about Multiple Sclerosis? If so, please visit https://multiplesclerosisnewstoday.com/

Susan Carey - My 21st birthday was at one of my infusions! Topics discussed in this episode:First experiencing double vision. Seeing two golf balls and two basketballs, the optometrist asked her to leave the room while her mum was told there was something in the back of her eye. she could have a tumor or multiple sclerosis.    Being officially diagnosed with Multiple Sclerosis - a degenerative health condition at 14A lumbar puncture done by a medical student. (A lumbar puncture is a common test done to diagnose Multiple Sclerosis. It involves extracting some Cerebral Spinal Fluid from between the discs in the spine and testing it) The people in Susan's Irish village sent her Rosary beads, jumpers and mass cards through the post, was this right to send to a 14 year old diagnosed with MS? She was convinced she was going to die! Treatments and Multiple Sclerosis. We discussed the MS drug Avonex and Susan's experience with the injectable drug. She was so terrified that her Father kindly stepped in to help her with it. After this she went onto Tysabri* (natalizumab) and then Lemtrada* (alemtuzumab) - both infusion treatments which means you need to stay in hospital or a few days. With Lemtrada you also need a few days of taking oral steroids before starting the infusion. Susan was told there was not a lot of research done around Lemtrada at the time. The nurse also didn't know what it meant for fertility something which Susan hadn't even thought about yet. She was told to go away and Google it, research everything about it that she could find and come to a decision on her own. Susan tells us about how she spent her 21st birthday in hospital doing an infusion and the doctors and nurses left balloons, cake and gave presents which made it far easier for her to deal with. Focussing on what you can do. Every day with her dad Susan would walk the length of the small pier in her hometown. She managed to do this after the Lemtrada treatment without holding on to anything. While she was in hospital, Susan decided she would not miss out on any of her diet or training programme so she packed herself some meals to have in the hospital and made a gym out of what she could find around the ward, like the stairs. Living through your teenage years without being able to do the things you absolutely lived for. Turning the hospital into a gym so she could keep up her fitness routine - even whilst being attached to an IV drip! Planning and prepping her own meals to take into hospital. There is no limitations around you, you can always work around things. Starting her own fitness coaching business after feeling unfulfilled in life called ‘fit fusion' an inclusive disability fitness program. When the people in your life are supposed to be supportive but just make you feel inferior when you can't do what they want you to do.  A shift.MS takeover made her realise what the hardest part of her illness - family and friends' unhelpful comments, suggestions and advice.  Best advice for coping with Multiple Sclerosis? Suan says to network online with people already talking about their experiences. *Tysabri is an intravenous infusion (drip) once every four weeks to reduce the number and severity of relapses. It reduces the number of relapses by about two thirds (70%), compared to taking placebo.Common side effects include dizziness, nausea, urticaria (a skin rash) and shivering.Treatment with Tysabri may increase the risk of progressive multifocal leukoencephalopathy (PML), an uncommon brain infection that can lead to severe disability or even death.(source: https://www.mstrust.org.uk/a-z/tysabri-natalizumab) *Lemtrada is a disease modifying drug (DMD) for active relapsing remitting MS and very active relapsing remitting MS.You take Lemtrada as an intravenous infusion (drip) in two treatment courses, twelve months apart. It reduces the number of relapses by about two thirds (70%), compared to taking placebo.Common side effects include infusion-related reactions w

John Alam is President and CEO of EIP Pharma. Until May 2014, he was therapeutic area head for diseases of aging within Sanofi R&D. In that role he led global R&D activities at Sanofi directed at Alzheimer’s disease and Parkinson’s disease, as well as number of other age-related diseases. Previously, from 1997 until 2008 he held positions of increasingly responsibility at Vertex Pharmaceuticals, including Chief Medical Officer and EVP, Medicines Development. At Vertex, he played major roles in the development of novel innovative medicines for HIV, Hepatitis C and Cystic Fibrosis. And, from 1991 to 1997, while at Biogen, Inc, he led the clinical development of Avonex (interferon beta-1a) for the treatment of multiple sclerosis. John is currently also on the board of directors for Alliance for Aging Research (Washington DC) and was previously on the Board of Trustees of Accelerated Cure Project for Multiple Sclerosis (Waltham MA). He is also currently on the advisory council of the Board of Overseers of WGBH (Boston MA). John received a S.B. in chemical engineering from the Massachusetts Institute of Technology and a M.D. from Northwestern University School of Medicine. Subsequently, he completed an internal medicine residency at Brigham and Women’s Hospital and a post-doctoral fellowship at Dana-Farber Cancer Institute.

Episode sponsor: Grasshopper, the virtual phone system. Sweat Equity listeners save $50 when they sign up using the special link TryGrasshopper.com/sweat ⬇ LISTEN TO SWEAT EQUITY ON ⬇  ITUNES: HTTP://BIT.LY/SWEATEQUITYPODCAST LAUGHABLE APP LINK: HTTP://BIT.LY/2K7Y6FF ⬇ WATCH SWEAT EQUITY ON ⬇ FACEBOOK: FACEBOOK.COM/SWEATEQUITYPODCAST YOUTUBE: HTTP://BIT.LY/SWEQUITYYT   TRANSCRIPTION VIA DRAGON DICTATE Music drag you out little light click minimum blower doing this many podcasts and whose locksmith as always Eric register cohosting with me and then special guest friend of the program multiple time guests owner of social alchemy that's S – alchemy.com right Sam Gant Samantha Gant if you're formal, let him hear it you gotta pull that Micah have a gallon gas you got a nice genteel voice so you got for that I got a mumbling voice I gotta get right on that robot deck of a microphone however elected on Dixon jets how I know people get it done I'll say robotic and they immediately go oh I need to get closer to the head of that I had to the Dickel right rent that's mainstream this will again is time so let's do let's do this to show little loader sponsor little let's get on the way not that out I'll bring it up three times I love them I love grasshopper were migrating over I keep saying were going to we have to because my business phone line that we share sucks it's it drops calls its Wi-Fi linked only really it's post the link to my cell phone but when you your iPhone their new iPhone comes out my iPhone gets downgraded like crazy so the eight came out my 7+ is turning into a pager slowly you and so so that makes my line to phone app a lot worse because it will try to ping on that that's what removed grasshopper our listeners get the hook up on a business phone line just little app that you can share this is why you want to get an extra line of Verizon or AT&T or whatever boost mobile if you gangster grasshoppers the virtual phone system our listeners get 50 bucks when they sign up using the special link try Grasshopper.com/sweat that's tried grasshopper.com/sweat will put the link in the episode description three we've had probably three clients use this and I've been thanked I don't know what we get back but everything we get back in it any ad we do any promotion we do it goes right back into this podcast maybe we can get some good gas I'm thinking about working to deal with the PR company so they can help us book some higher income from real ghosts I now not like me everywhere I think I knew that something to come across yet what I like you're not real I mean you've been on so many time to hear your you know your special guest host you can do drop ins we didn't know you were to come on no we didn't even know for you doing today so you know we tried it would try to jam the switch shoehorn this mini episode in 20 minutes 30 minutes it's like working out better we get that little one in the not doodle right we do it to get away from the computer screen that to slobbering is a little bit of a break got me we finally were all staring at screens is right now I know that I like different will now yeah it's not like looking at pixels on like Photoshop to be like is that is cannot yeah you got a perfect circle yet is that it is ever part of your brain yeah using well it's come it is one of the few conversations we have all day just to get it I mean what how are you all deal with that because I know were trying to work on getting out there little bit more into cryotherapy tomorrow just to get out of the office and get off get off the drift trap I want to do like an archery want to go shoot bows for summaries I've had the psych craving to do that and letting us so much I have another friend of the program to eight monkeys CEO archery at a wedding but I've had a hankering it is not just listen to Joe Rogan's podcast just like the had a Leica I had this with the one at I don't even know how to drive stick but I feel like a race of car I has no go past that just go pay all you do driving school to do the like bad ass driving school as I heard is awesome as a summer and had to go to Daytona Cross is a good place to learn needed for like three days and you learn like crash course yeah you do you can do burnouts and my bad ass cars and stuff I if you go to my life I do agree with Rogan and it's it's beneficial to go after something that you suck at you know you will suck at right so I know I'm a total bench that I don't how to drive stick but I don't either to sitting out like a cabin I found I could highlight was no life or death like I could figure it out while many are born notable for a 383 I'm 84 so it's kind it was almost obsolete a little bit the people and I Apsley and 89 yeah I mean I get your I was like the houses at 90s but yeah yeah but no say like it's it there's no point in a lot of ways because by the time we were 16 everything was pretty solid yeah that my eyes at my friends that still droops take act like the bad ass it's kind like the guys you don't whether Cifelli before how much of anything if you just can't get a new car but yet there's not like to be a new car that's worth the shed that you know unless you want that unless you really really seek that out but anyway I'm saying like it's good to go after some you suck at light parent take I suck at it I have hidden it on full force I still suck at it I guess you showing up that's that's parenting just showing up to this a lot of it effort efforts a lot of it the prophet the hard part is like there's no information to look anything up on because the mommy blogs of created fake news everywhere so it's like or even the old school stuff for you let your kids go out and play on top of the metal framework of a right right scaffolding outside what the didn't know what they were talking about back then even my problems being written what foods you should eat if you're pregnant is like is all over the board really is to say you just don't eat anything I think you I love to be pregnant and what you should eat as a human in general all thrown in the I mean that's rough it that's yes simple you're doing the ketogenic diet yeah I want to do it I think I back that's another thing ketogenic diet is a high fat almost 0 carbs I basically shoot to eat zero carbs per day and then you get consequential carbs so it's usually about 25 g and I reluctantly harvest yet one is like the accidental part and then it just a little bit of protein think it's not exact my crazy about it but I mean my wife and I both do it that's when you do eat carbs like such a peace ship now you just don't know I can't go back you been in the office for a while now it's like you eat lunch lunch now I go I usually don't eat until like 56 that they having whatever rib dinner six usual any] he doesn't know he doesn't have to go to the more you know he doesn't do what I do like a hard bargain Sgt. Norley shut right now like I got ago like yeah I did know that I'll have to take like a good bid day one as I'm just eating whatever I know yeah and just burning hot all the time you know how to view my sheds but it's you know this for this what you and I know you never want back in the office like a man that was as if you know life that was a story writer might just be a personality difference Ellen managed to lose you here if you didn't smoke a cigarette outside that's got to be the other thing you leave for seven minutes ago do right is so anyway it's I noticed patterns like that can help it cannot-do not add to two years from now will I wouldn't be doing it my wife and to coax everything you more energy yeah that's it there's no ups and downs so no roller coaster of blood sugar basically you you work on endogenous ketones so your entire energy system of your body is changed just staying in the first light the reason why I don't get into his kiss the first like three or four days really blow yeah you like it just sits like rehab almost yeah I Alaska yeah like stop eating any sort of shutters that might just detaching linear bodies like her so much withdraw it's a detection it's a change you any got drug addictions one way to put it I mean you know it it's it's really tough to quantify it but and I can go back to the eating carbs and ups and downs and whatnot that's his wife and I like what you're doing is like doing what ups and downs I really am he's got I got dad but he's had a packet of hardware that is L suppose should you also have a brand-new baby yeah but arguably his is harder because they run around and like if entertaining I know that's what adds common yeah get a lot of exercise yeah kids it is our the Quito things hard he's doing when stroll unless you are at home and you prepare for it like you can't just pop out mean you can't go anywhere need a chicken Caesar salad you know that's probably pretty close to being cute without the crew done listening to some post in this live video for Windows it's it's not easy giving a plan for but same time makes more efficient not worry about eating all the time Diderot if you approach this I do this in college for you will if you skip a meal altogether like and let's face it lunches I kind of secretly expensive when like you don't weird due to don't make your own food you know like it's like how do you spend 12 bucks if I can Chick-fil-A like I only got three crazy but chick flick coming 40 delegates is a lot you know this is Butch bowing his move the market had but like I just don't want to do that first 72 out I have to find 72 hours where I can be kind of grumpy are the normal yeah and I don't I don't see that unless it's not good to be around the holidays were taken to be great either that you don't drink beer right with this snow I judging wrong run flareup trails like you can't like that's like talking crazy sugar well like yeah it's the way that it is longer interacts with your blood sugar like it doesn't really function as sugars made from sugar but when your body's processing alcohol it's not the same idea and I'm not exactly sure how to explain that you're not like scientific but I can hear you like to leave family out I know you can drink like red while you guys do a redline and like some liquors are good you know like that's for think beer me and it says right on label how many cards as so you can yeah whatsoever for me let's let's get to some business the stuff I mean I like that I like your work life stuff stand me what you want what's new what's going on in the social media world Snapchat you can advertise on per my my niece who told me thinks you need me a lot more accessible for people to advertise that there is always an opportunity of analysis more accessible and advertising a little bit more and I made that filter you told you to make yeah I made one up double posted with episode if I can get around put the blog post I'll start shortly afterwards I sat on my face like I move my laptop everything what what else is finding it interesting that they're dealing with Facebook messenger Facebook is trying to open up the market to kids under the age of 13 by CPS yeah yeah and I came up with can't remember when Sam chatted the map thing were you know if you show people that you can literally track anybody around the world which is crazy unless you ghosted yourself which everybody should begin we immediately hit my nieces up like do you have a setting you know this is a fault and not being on its yeah exactly on by additionally felt like with that faith that mesenteric tank on there trying to set it up that kids because most kids now it's only 10 years old have some sort of device that communicating with her parents on so Facebook is looking to enter that market and communication tool so therefore allowing parents to pick and choose your kid can talk to they've done a good job that shape safety shield I say that a Facebook like ever it's the ugly person you hook up with like you never talk about it but everybody has had how many kinases it so light reliable yeah it's like we used to say in a GUI go ugly early college sometimes sometimes you just have to hook up for convenience college which is pretty much most dues are reading lots if you really all the celebrities that are getting busted I feel like most of this is just because they're lazy the you are in the rooms are aggressive but that I like describing acyl and I'm horny right now Kevin Spacey condensate but my thing is the date that they've done such a good job of making people still have Facebook with that messenger part definitely like that that's so brilliant if you think about it because most people can't get my email if you want to email the show law Atoka works TOC OW.COM but I mean that's how you can email me but if someone watches this or you know you meet someone casually and you want to get a hold them for worker or just like a quaint and so come to his party it's way better and it's like verified taxes on out it's funny I see the need to get the tablet just secured like this phone doesn't this much for a 10-year-old doesn't do that it doesn't go on this app to do that or what and if the device itself is what it is they make their own devices Facebook you know you want to I think that a plague is out later to all you got rid of augmented reality steps are coming out with his in order to achieve augmented reality as of right now on its rail camera so Snapchat started augmented reality can accidentally and now Facebook is picking up on that and therein to be incorporating up in the next year a lot of different the features that you would need to use Facebook camera today that still would make sense that they would eventually somehow come out of their own device so what what is so that I see all the audit big social media apps that are splintering off and the these brand extensions like messenger for Facebook I'm trying to be obsessed with LinkedIn right now even though it's not sexy but LinkedIn hey nine dollars per person trying nine dollars CPM for ads what way more reliable data over there that his chest strap fastened me to be market yeah that's my big thing is like I like that you can I like that yeah I can see who's if I pay I can see who's looking at my profile that I just befriended him exactly what they were just complaining about Facebook I repeat business is creepy creepy but you pay for it everybody knows it it's gonna it's their right like what if you the worst fear when Facebook was out when you're like in college are just out of college or whatever and had it was like when David to come out there to let is there to let everybody know if you saw your profile if you're like creeping on a shaky lie yeah yeah yeah interesting now that like Snapchat and Instagram staff is obviously most people now that's just part of their platform by looking at your staff really I do not have Instagram down your stories Stiles is basically picking up exactly what snapshot is that they applied evidence ramp yeah I love it hey Tim I like it better except really little features I doubt why there's something about Instagram that I just think is more solid like I feel like more artsy more fine on Snapchat I feel like it's more just interacting with my friends I can feel a bit more artsy on it's a gram just with a different kind of filters that they have in a different light campus will I know it's way more functional than Snapchat I have I mean I believe you have left out my phone five times because the notification will go away to tell you the truth I only talk with more my friends on Snapchat but just as the chat setting 91 Texas educate but it's not to me like format that's more taxing like that's like another you because you really want to check you are you using Snapchat on Mike I think this is a string of messages mostly but it's like straight messaging all the time in my I oh I don't know I know it likely in a text by conversation and you don't know how to end it just keeps going like I feel like that's just that snapshot to me right like mortgages and a lot of people say I really do forget but like because it by default you're saving everything in it disappear so if you read something and put down your fountain and like Nancy something like 15 to 20 minutes and I Kelly I respond percent go back and look like she they say I'm trying to remember something you might end it to me just like I remember you said I gotta go talk to my people people usually know you said this in the near back in conversation everything you say hey before whoever knows me by never does a pretty well knows I don't remember a lot of stuff anyway so like I have all signs right now so target like you know I but it's just I'm trying to go the less I wanted like compartmentalize this a little bit more like people talk about multis I drop my phone to call you or talk about multitasking and it's like some of your good multitasker like I guess but I I literally can't do and at the same time like to multitask and I don't think that's something we can do it like Bill Clinton they say can like read a book and like listen to someone else tell him something about like it one of his assistants on some yeah Bill Clinton I know I got my nose on same I mean – but job listening room is what is a good subject someone to talk about it like but that's multitasking to me is that we the common definition I think is people think multitasking is being able to jump around a lot I do think that's an advantage to work on age because we had to grow up you start something I'm to go over here work on this other thing I'm come back to this if you like as I do house chores right like I would hit the I'm a get these dishes done but that role to get the laundry but let that role than him to go over here clean up a bunch of stuff will come back to that dishwasher you know in the you discounted you become efficient without even realizing it I definitely think there's an art tab multitasking because it can make you definitely less productive oh yeah for sure invite creatively it'll suck your creative juices Adia yeah you take take that ticket metaphor however you want to suck your bone dry creative ball juice okay well that that's been ever I mean we can get down that road of you guys are multi-testament that I'm sure Bill Clinton I was first applied microphone calls no hand on his meat but like you multitasking where were were trying to struggle with it does work will try to figure out compartmentalize right so some projects were working on Everest doing a lot of lead on developing websites that's like we've been think about site that's a lot of short-term memory that you're working with to like you don't want to have to log every step you're doing and video right now we can't record everything because it's just lots of well and I would love to be amazing and just have everything backed up need to like really timestamp all this stuff saying I will be part of it to be doubted held that's the goal is eventually be able to show clients like I want to show Mike a time lapse of us like sitting here working what's miserable because we won't have a very very fast as we get penalized for duty to quickly people think oh I should I overpaid you know so so are our ability to multitask projects you note in chunk amount depending work like that like I we've Artie had it because Eric's been too quick on on sites to get back to them for that first iteration of design and there like Will hooks along with the second-rate rail would know about me and we can get feedback notes but like the thing is like I can feel it when I'm talking to him like that if they think they got burned and it's I knew now he stayed up all night did that you know like he was cursing about it for me I didn't want to I was right you know with that stuff it's like you said short-term memory and you if you lose it you gotta come back to it you don't know or you may know always remember your head was that when when Navajo latter having coming back to it's like okay I said to do this one last page and at the same time were trying to work on not getting this kind of analysis paralysis of all think of a better had a rhyming term for this but like we're looking up code yes rails like we got create a rule like I know you have something for 4590 minutes and then cut it off yeah 90 minutes might be too much I don't know what me but it's diminishing returns though no I know is Bob saying that the cut offered cigar that's that's it yeah what does thing in our to figure out what you're doing to get into it done but but I want to generate once I started going I just need to be better searching for an answer you know there's better ways and resources that you do, collect over over time so could you find something here like moving on yeah you never log it in and like we should be recording anything that was hard in life right right and then have a repository of all the ship what do better at that yet that's you know to me that is database that's ultimately chassis because your thinking long-term it is proactive and were thinking like Avonex when we get a website grunt you note in here will have a repository of all the shed that was really hard for us to figure out but here's the playbook Monday buddy oh yeah yeah that's that's way toward guys like clean up around here is kinda yeah so gone through so many evolutions will I had the deal is on one of put a lot of money into I don't want to know our counselors are so tight ever since beginning that I can't justify like spending too much on the office great job piecing it presented together so this is good at working with this table can over that way were to put the TV over here couch back in here catching and then I want to keep I will put more artwork up on here that we have and then on the other side I really want to hook this room up multitask this room you will test every and how to get all the meat off of Buffalo right you do with content I would say this a lot lately I don't I don't let often a lot of you know you know the old saying like he'd never heard that get all the meat off the bone well get everything off of the fund use all parts of the debt so hard right so you may have different meets summer failures of the matter is you eat all that you so use the use the first so use the pellets outside else the upheld Jesus Christ alone for I told her that I do not undying-anything having a Friday night so my thing with content and this goes back to social media and content creation what you're doing a lot of the time what errors do what I'm doing is anything that's original content like this podcast I wanted to get out as many mediums as possible words not so time-consuming it's not worth it right so I been telling clients like here audio recording idea like I want to record a blog post is just talk just talk about something that kisses you off about you know your your industry or car station were to play against that on the dictate that audiogram to transcribe it then working film you on video onward and upward massage that first script and then you get it on video talk about it then you know if you have a podcast you can put it in audio form right or you can put it up on the site on your website so people would listen to an enemy with captions with SRT file… We left and then and then write a blog post and wrap a little bit more around that then the last hardest one is in infographics and make up a Jamaica image and yeah yeah okay all right but the ideas hard right yeah it's hard to think of a good idea or it's hard to formalize like this is a unique idea if your small business owner or you're doing your own content creation the unique ideas the hard part like getting that down pat yeah will you let me what you're talking about though is content creation in itself were trying to figure out ways to get the people engaged in kinda thinking about these things and the best within and over still try figure out the best way to get these clients that just kind of come up with stuff like that is good having her read with the diary sort of idea of a blog post for its part of our our guerrilla video process we been working on were wheat we set up a studio in the clients all yeah we should be coach Bob we record while were there showing them how to use it so they have that video and then that the ideas they drop it to us in slack we can take that same thing with audio you know it's just hard it behaviors the hardest thing to change business right and just life in general you know I hate that I hate the the phrase like people never change you know but it's it's true it's mostly true and you can adapt and kinda going to different fees if only I don't really have little he sucked into brownies that never do anything like I I had no one not by perfect and I want to check I jibed work on trying to can you tell you have to be conscious because it actually do admit it bothers me that it's like because that's how most people's mindset is to no light I got it figured out anything about it anymore that part is closed off right right moving on right that it always yelled laziness. Now that right I don't want to you I don't have to do a lot of self-preservation or self or work on my self preservation yeah man because that's what it is it's fear right people don't people don't go out of their zone like learning stick shift on a racetrack or going bow hunting I'm afraid the bow hunting I can be strong enough to pull Bo back I think how to argument consent I live because that's what I would fear that I go out there and there's always big dudes the first offerings all have a crossbow my hip so just in case you think it's all right but totally practical I'll have a quiver around my back note I five pulled about four I went to school at Auburn no can't everybody backyard headlights if I can the phone like phone targets in the back okay.then go for it I don't know but what I wanted to discover I want to get to the point where you have to you really have to hunt like you have to be in shape to do it like it's a actual sport I don't want if I can dear Stan tree stand fighting bull ship hunting season with a shotgun just waiting for dear so it's so pushy to me I ever did in Pennsylvania but Evie done it like I went now it sounds like talking boring public school get off the first day of hunting season that's how important premier hunting as a tight fishing in a in a man-made lake that they put trout in notes like my dad one time was in Switzerland and they were like you want to go hunting any of them I don't hunt I can find a way not dislikes like he had anything very like decked out all you do is really stick your gun out this little slot and then be hey people to go around and chase the deer in front where you are the rear glory hole but yeah it's a weird way to tell Laura no story but yeah oh that was a no go dad to get all well I don't know what kind of yeah what I like holding things yeah Switzer very open-minded just neutral let your freak flag fly I think we have been on that there's no you got in on the high note to stanza so long to get a house any tips any other stuff I just send this to your dad so you can we get them on the podcast as an entrepreneur I think you'd be really interesting from what I know I will talk to him about it okay okay your dad's Richard Branson you can see that you can see them once I like Eric I think tank for Eric for Sammy law sweat equity podcasts subscribe rate review that five-star rating helps us a lot on iTunes or subscribe on YouTube that'll help you it will send you notification each time we have a podcast about the young ins like listening to stuff on YouTube unlike a second screen or some like that so we are on their will we usually post on Facebook first and I have our sponsors try Grasshopper.com/sway this SWEAT EQUITY PODCAST, SOCIAL MEDIA MARKETING, SOCIAL ALCHEMY, SAMANTHA GANT, LAW SMITH, ERIC READINGERERIC READINGER, LAW SMITH, SWEAT EQUITY, BUFFALO, MULTITASKING, SOCIAL MEDIA MANAGEMENT, SOCIAL MEDIA STRATEGIES, SOCIAL ALCHEMY, SAMANTHA GANT    

[intro music]   Host – Dan Keller Hello, and welcome to Episode Ninety of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m Dan Keller.   Welcome to the weird world of the U.S. pharmaceutical market. A few outrageous cases of drug price gouging have made the headlines, but in multiple sclerosis, a more serious concern is the steady annual rise in cost of all disease-modifying therapies, or DMTs. So says Dr. Daniel Hartung, a researcher at the Oregon State University/Oregon Health and Science University College of Pharmacy. In a recent study, he found that MS drug prices over time outpaced both inflation and similar biologics. It’s not just the new drugs. As each more expensive DMT comes to market, the prices of older drugs also race to catch up. It’s affecting the drugs available to patients and causing other concerns.   Interviewer – Carol Morton Can you tell me what questions you were asking and why?   Interviewee – Daniel Hartung Sure. So the study that we did had its origin after having some conversations with some neurologists at OHSU about increasing frequency of seeing their patients facing larger and larger, not only cost sharing and copays from the insurance companies for drugs for MS, but also increasing restrictions, typically from insurance companies in kind of what medications they were supposed to take first prior to perhaps failing one, then going to another medication for MS. And so this is all kind of happening in the context of what they were seeing as just higher prices for some of these medications.   And so what we decided to do is…no one's really done this…is look at in a systematic way the trajectory of pricing for MS drugs, essentially since their approval until we went through the end of 2013. And to look at what the just general trend was, try to figure out if there were certain specific factors that were associated with higher prices over time, like the approval of newer agents, things like that. That was kind of the general objective of the study.   MSDF And then how did you go about conducting this study? Is it hard to find that data?   Dr. Hartung It can be. So I'm fortunate to have access to some data set that has longitudinal pricing data for pharmaceuticals for the past 30 years or so. And so from my perspective, it wasn't difficult. But essentially we used this data set that collected average wholesale price, as well as wholesale acquisition cost, so kind of the two usual, most common (I'll call them) sticker prices for drugs. And so this data set for all medications, it kind of tracked pricing of medications over time. And so that was the core data set for our analysis.   MSDF And so you pulled the multiple sclerosis disease-modifying therapies out of that. How many did you look at?   Dr. Hartung So in our study we looked at 11 medications for MS. They included the three what are typically called platform therapies that have been on the market for about 20 years now. Those include Avonex, Copaxone, and Betaseron, and just followed them through time, through the approval of several other new agents, like Tysabri. And then there's in the last five to six or seven years, the FDA has approved several agents that can be taken orally, Gilenya, Aubagio, and Tecfidera now. And there was a couple other kind of miscellaneous agents that were kind of variants of the interferons and things like that.   MSDF And then what did you find?   Dr. Hartung Well, there are several interesting things, but I think one of the most striking things is that the prices for the platform therapies, Avonex, Betaseron, and Copaxone, were pretty stable for at least 10 years from their approval in early to mid-90s. And then, essentially what we observed is that new agents that came on the market, starting with Rebif in about 2001, came out, and they were usually priced about 20% to 30% higher than the existing therapies. And what we observed is that when these new agents came out or approved, that these higher prices, the cost or the price of kind of the platform therapies quickly escalated to almost match the price of the newer agents that were approved. And this pattern kind of repeated itself and actually became more intense when the newer oral agents came on the market in the last five or six years.   So the cumulative effect of that is in the early 2000s, Copaxone, Betaseron, and Avonex were priced about $10,000 to $15,000 a year. And at the end of our study, all of the agents that are currently approved were priced between $50,000 and $60,000 per year. And so we tried to quantify kind of the rate of increase and compare that with other kind of benchmarks: inflation, prescription drug inflation. What we found is that the price increase for those agents was well above what you'd expect for not only just general inflation, but also prescription drug inflation.   MSDF MS drugs, the cost of all of them, not just the new ones, are increasing at a rate higher than any other drug category?   Dr. Hartung In addition to looking at kind of standard metrics of inflation, we compared the price increases for the platform therapies to what we considered kind of comparable biologics. So we looked at a class of medications called tumor necrosis factor inhibitors, which are used for immunologic conditions like rheumatoid arthritis. And what we found is that the price increases for the platform therapies for MS increased substantially and significantly above price increases for those medications for the tumor necrosis factor inhibitor. So from our study, from our perspective, prices increased higher than they did for these TNF inhibitors.   We haven't really compared them across other classes of drugs, but there are some new publications that have looked at price increases for other agents, such as in other classes like insulin, drugs for diabetes, and cancer agents as well. The numbers are slightly different, but the trajectories look pretty similar. So in the last, you know, 10 years, there's been almost it seems like a logarithmic increase in the price of many of these agents and classes.   MSDF So is this a case of a system that has incentives that maybe aren't as well matched to patient needs as they should? What's going on here?   Dr. Hartung I mean, that's a good question. Definitely there's a system. The market-based system for pharmaceuticals in the United States is incredibly dysfunctional in that it's very dissimilar from any other kind of consumer market for technology, phones, cars, things like that, where you typically see prices go down after a while. And you don't see that in health care or in drugs. You see just prices increase. And so there's a dysfunction that just kind of is core to the economics of health care.   And then I think there is an element of pharmaceutical industries pricing these agents essentially what the market will bear. Now my opinion is that a lot of the aggressive increases in price were initially seen with some of the cancer agents. And so I think that in that field there is a kind of pushing of the envelope for many anti-cancer drugs that's now has proliferated to other classes of drugs, including MS agents.   The other element that's kind of unclear and adds to the murkiness to this is that, you know, our study and other studies that have looked at what I'm calling pricing of the agents use average wholesale or WAC and with some sort of adjustments for rebates or discounts. So typically third party payers or pharmaceutical benefits managers will negotiate with pharmaceutical industry to lower the cost of the agent for the payer. But all that information is typically proprietary, and so it's really difficult to know what the actual cost of the medication is, unless you're paying cash. If you're paying cash, then the cost is going to be pretty close to the price that's set. So people who don't have insurance are paying the most, and the people with insurance, Medicaid, any sort of governmental insurance, they're paying typically AWP minus a certain proportion or WAC plus a proportion percentage essentially based on the rebate that they get.   So that adds a little bit of kind of uncertainty. Pharmaceutical industry may come back to say that, you know, we're giving pretty good discounts on certain medications in certain payers, but from the data we have and the pricing data, there's just been this aggressive increasing in prices. And we don't know if it's being mitigated by increasing rebates and discounts over time. So it's complicated.   MSDF What do you hope people will do with this information? It does sound like a complicated system that's almost unapproachable for the individual patient or individual doctor. What can people start doing now? Where does the responsibility or responsibilities lie?   Dr. Hartung You know, I think that the data we generated in our study has been useful for some of the advocacy groups in the multiple sclerosis community. So the National Multiple Sclerosis Society has been using it to try to, you know, advocate or perhaps political reforms or some other meaningful reforms in kind of how these things are reimbursed, things like that. Drug prices has been in the news quite a bit over the last several years, and now even more with the election season in full tilt. And so I think a lot of the candidates are talking about potential solutions to the issue.   From the patient's perspective, they're in a real quandary in a sense that even a sharp move with the Affordable Care Act to a lot of high deductible, high cost sharing plans where if your monthly cost of a MS agent is $5,000, you pay 20% of it until you hit your deductible. You know, that's $1,000 at the pharmacy, and that's a pretty big out-of-pocket cost that you face. So I think that there's some, you know, movement in the advocacy groups to try to…especially working with insurance companies to make sure that access is open because these medications are incredibly individualized. And there's not really good predictors of who will respond to each type of medication, and they're all different. Some of them are administered subcutaneously, intramuscularly, orals, and so there's some patient preferences that fall into play here as well as the price. And so I think there's been some movement and some discussion making sure that access to all the agents is relatively easy for patients.   But from a solutions to the pricing situation, you know, I think we're still kind of in discussion phases about what we can do as a country to kind of deal with this issue because it's not exclusive to the MS drugs.   MSDF So what's next with you? Are you following up on this?   Dr. Hartung So from our perspective, the group that I worked with, the two neurologists' project, we just submitted a grant, well, it was in January, that we hope to be competitive and hope to get that's looking at how these high drug prices actually affect patients in terms of their medication taking and potentially adverse outcomes because they're not taking their medication. Either they're hitting access restrictions from insurance companies or they just can't afford or have problems with the cost sharing or something like that, and so trying to quantify how this is affecting patients. And so from a research perspective, I think that's kind of our next move.   My colleagues, my two neurologist colleagues, they're really active in kind of speaking with representatives at the state about the issue, bringing it to increased visibility from our elected officials as well as making sure that the MS Society is aware of kind of the current status of the pricing trajectory. So we've been updating our graph that we published as new agents come online and things like that.   MSDF Can you give us a couple of the updates you've made since the study?   Dr. Hartung They haven't been dramatic, but there's been a couple new agents that have been approved. And I guess most notably is that the first generic drug for MS was approved, I believe, last April. So a generic for Copaxone came online. I think there's two manufacturers of it. When it came online, there was one. And so I think it was priced just modestly lower than the brand name Copaxone. But something interesting also just dealing with Copaxone, which is the number one MS drug in terms of sales, so when Copaxone lost its patents and lost its kind of patent disputes, in preparation for that, Teva released a different formulation of Copaxone.   So Copaxone is traditionally a daily injection. And so they released a three-times-a-week higher strength injection and basically switched everyone from the once-a-day to the three-times-a week 40-mg injection. And so I think a large proportion of patients who were originally on the once-daily Copaxone were switched to the 40-mg three-times-a-week Copaxone. So that really to some extent mitigated if there's any sort of savings due to this new generics in the field, kind of really mitigated any kind of savings due to the new generic as most people are now on the 40-mg three-times-a-week product. And the generic is not substitutable for the 40-mg three-times-a-week product. So that's a very common tactic in pharmaceutical industry approach to try to like sustain their franchise with a particular drug that's going off patent.   But the big questions are the ones that don't have a good answer. Essentially, what do patients do about this? What do we do as a society to deal with this issue? And you know, there's been proposals that have been put out by different elected officials and other folks about, you know, we should allow Medicare to aggressively and directly negotiate with pharmaceutical industry on price. We should allow importation of medications from other countries, similar industrialized countries like Canada. So the United States pays by far and away the highest prices than any other country in the world. And so many people think that we should be able to import these drugs that are the same drugs that are going to Canada into the United States. You know, some people suggest that there should be some sort of forms of price control. You know, maybe medications shouldn't be allowed to increase 10% a year or something like that.   And so all of these are being kind of discussed and played out and the pros and cons are weighed. And whenever you talk about limiting price increases, the usual response you get from industry is that any constraint on the amount of money that they're able to make and the profits that they're able to make for their shareholders is going to have some sort of effect on kind of future innovation potentially. Whether that comes to bear or not is unclear, but that's usually the number one response you get is that we need to have these high profits in place because it's an incredibly risky endeavor that we're doing. Only a very small proportion of drugs that are under development actually make it through the developmental process and are approved and make it to market. So any constraint on profits is going to have an effect in terms of future innovations and future breakthrough medications and things like that. Incentives are a big…they are real. And so that is something that needs to be weighed carefully in kind of any solution, essentially. I don't think it's the best solution, but just people are talking about a wide variety of things, I think.   MSDF I appreciate your raising all these issues and going through the study. Is there anything else that I haven't asked that you wanted to add or emphasize as take-home lessons? Something to mitigate the rage, I don't know… [laughter]?   Dr. Hartung Yeah, well I mean there's been a lot with all this, you know, the Valeant Pharmaceutical issue and the other company, Martin Shkreli guy who's castigated for increasing the price of this drug for toxoplasmosis by like 5,000% and buying the company and jacking up the price. That's a separate phenomenon of what is happening. But I think the outrage over that type of exploitation of the dysfunctional pharmaceutical market kind of masks and kind of hides the other issues that are happening on a consistent and aggressive basis in terms of just regular 6% to 10% increases in price on a year-to-year basis for drugs that a lot of people use, like drugs for diabetes or MS products, cancer agents, things like that. And so, you know, you have these really highly visible cases of really dramatic increases that are kind of morally outrageous. They draw your attention from the real and kind of moderate but aggressive and year in, year out, increases that are seen across the board in a lot of different agents. And that's where our focus should be essentially.   MSDF That's helpful. Well, thank you so much.   Dr. Hartung Yeah. My pleasure.   [transition music]   MSDF Thank you for listening to Episode Ninety of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Carol Cruzan Morton. Msdiscovery.org is part of the nonprofit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is Vice President of Scientific Operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   [outro music]   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.   For Multiple Sclerosis Discovery, I'm Dan Keller.

[intro music] Host – Dan Keller Hello, and welcome to Episode Eight-two of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m Dan Keller. Depression affects as many as 50 percent of people with MS during their lifetimes. But according to Dr. Adam Kaplin, a psychiatrist in the Johns Hopkins MS Center in Baltimore, it is treatable to a large extent, and with good results. Dr. Kaplin studies the immune basis of depression and cognitive impairment, specifically in MS and central nervous system-related autoimmune diseases. We met in Baltimore. Interviewer – Dan Keller Let’s talk about depression in multiple sclerosis. Is it a reaction to someone having a chronic disease, or is there something more going on because of the disease? Interviewee – Adam Kaplin It’s a great question, and what I will tell you is one of my patients says to me that you’re either stressed, or you’re dead. We all have stress going on, and it’s always possible to look at something in our life and say, ah, that’s what caused the trouble. But we know now, in multiple sclerosis, the depression is due primarily and dramatically significantly to the inflammation going on in the brain that causes all of the symptoms that you see in MS, such as cognitive impairment, or weakness/numbness/tingling, autonomic nervous system dysfunction; all of those are effects of the MS on the CNS. And in the case of depression, it is similar. It’s not a character flaw. It’s not a personal weakness. And just to, you know, clarify, one of the best pieces of evidence we have for that is, number 1, that people who are depressed with MS, it does not correlate with their EDSS scores. It doesn’t correlate with their level of disabilities. So if it was you know, gee, it’s just a matter of stress, then those people who are in wheel chairs or on ventilators should be depressed, and those people who are upright and walking around shouldn’t. But in fact, I think the key element is that this is one of the, as they often say, silent symptoms of MS. It occurs to 50% of patients across their lifetime. And it is important you know for people to understand that this is not something that people aren’t rising to the occasion, or those kinds of things. MSDF Is depression accompanying MS more prevalent than in the general population, and how serious is it? Dr. Kaplin You know people often ask why, as a neuropsychiatrist, why study MS? And I say, you know, why did Willie Sutton rob banks? That’s where the money is. MS has the highest rate of clinical depression of any medical neurological or surgical disease. Again, 50% of people, following the diagnosis of MS, will have a clinical depression. We can talk about what that is. And it turns out that that’s in any clinic you go into – neurology clinic – that’s one in four patients. If you go out to the waiting room, one in four patients will be suffering from a clinical depression. MSDF How serious a problem is it? What aspects of life does it affect? Does it affect everything, and how serious is it? Dr. Kaplin I think what is often misunderstood about the depression in MS is, I would argue, that it has the highest morbidity and mortality of any of the symptoms of MS, in the sense that it is the third leading cause of death in the largest study that looked at, across the lifespan, what causes death in people with MS, [found] a study out of Canada, where it’s more prevalent because of the higher elevation and the lower vitamin D levels, probably. And it is absolutely the case that seven-and-a-half times the rate – the suicide rate in MS – to the general population. And in fact, in the studies that were done, 30% of people with multiple sclerosis will have thoughts of suicide at some point during their life. Ten percent – fully 10% will attempt suicide. And that lethality is profound. But if it doesn’t kill you, it is important to understand that it has significant, significant morbidity associated with it. Just to begin with, the number one correlate of quality of life of patients—more important than their pain, or more important than their cognitive impairment, or weakness, or other symptoms—the number one correlate of the quality of life of the patient is their depression or whether they are depressed or not. And it’s similarly the number one quality of life of the care givers—not whether they have to push them around in a wheelchair, it is whether their loved one is suffering from a clinical depression. So it has significant morbidity and mortality associated with it. MSDF Are there aspects of serious depression in MS that are very characteristic? Any different from other severe depression? Or can it be recognized in the same way with the same diagnostic criteria? Dr. Kaplin There actually are some specifics to MS, although that hasn’t been well-published. I can be clear about things that are well-supported by the literature, and then those that are my clinical experiences. What I can tell you is that the way we diagnose depression in MS is the same way we diagnose depression in people without MS, which is you have to have 5 of 9 symptoms greater than two weeks, one of which must be either decreased mood or decreased interest. And we remember it by SIG-EM-CAPS, the nine symptoms. Trouble with sleep, where people are often having early morning awakenings or hypersomnia where they just sleep all day. Loss of interest, people’s get up and go has gotten up and gone. Feelings of guilt or worthlessness – and that’s a big problem, because patients who are depressed as a result of that often won’t seek help. You have to ask about it. They won’t volunteer it. And loss of energy or fatigue; low mood – that’s the sadness part; concentration problem; appetite changes, either increased or decreased weight; and psychomotor retardation, they’re not their normal bubbly self; and thoughts of death or suicide. With MS, what I will tell you, I find that patients with MS often, rather than sadness, have very frequently irritability. That tends to be more common. And sleep is usually decreased, not increased, so I see very frequently increased early morning awakening and those kinds of things. One pearl, though, to keep in mind is – or two pearls – if you’re trying to make the diagnosis of depression in somebody with MS, the first thing to do, because there are overlapped symptoms like fatigue, like concentration problems between depression and MS, so there is frequently, in up to 80% of people, will have diurnal variations in their moods; so usually worst in the morning and better at night. Sometimes it’s reversed, but you know that person has the same life circumstance, the same disease circumstance in the evening that they did in the morning, but their mood has changed dramatically, often, with MS with these cyclical changes. And that’s a good indication that it’s not demoralization; it’s depression. The other thing is ask the loved one. Get an outside informant, because nobody gets the brunt of it quite like the family. And they know that person, and if the family member says the one thing I hear so often, this is not the person I married, then you’re pretty much on the right track if you’re thinking about depression. MSDF How amenable to treatment is depression in MS? Dr. Kaplin I think that that is probably one of the key aspects is to understand that it is very treatable. So my expectation when patients come to me and I diagnose them with depression is that I will get them a hundred percent well with respect to those SIG-EM-CAPS symptoms, back to their baseline. And it’s very hard to get patients a hundred percent well from their gait problems; a hundred percent well from their cognitive problems. And, again, what I tell people is, look, I can’t tell you whether your cognitive impairment is due to the depression or due to the MS, or maybe it’s 10% depression/90% MS or 90% depression/10% MS. But I can promise you this: treating the depression, the depression is much more amenable to treatment. We don’t have good treatments for cognitive impairment in MS to reverse the cognitive impairment, but boy, we can reverse it if it’s a symptom of depression. What’s really exciting now is that we are now understanding more and more that many of the treatments you use for depression end up being good nerve tonics. So, there was a double-blind placebo-controlled study of fluoxetine demonstrating that, in patients who weren’t depressed with MS, they had fewer gadolinium-enhancing lesions over 24 weeks. And then there was the FLAME study in a related kind of way looking at fluoxetine as a way of significantly enhancing the recovery of hemiplegic stroke patients. So it turns out that I wasn’t so misguided in thinking that studying the immune basis of depression would be important, because as it turns out, our treatments actually do have an effect on the nervous system and the immune system for general types of depression as well. MSDF That sort of covers the SSRI class. What about tricyclic antidepressants? What about SNRIs? Do those fit in? Dr. Kaplin Yes, so absolutely. So the topic of how to choose and select the right treatment for patients with MS is … we could spend an hour and just sort of get only the highlights done there. But generally there’re sort of two strategies. One is to use a medication that has the fewest side effects, so that you won’t have drug-drug interactions with the patient if they’re on a numerous medicines for other concerns—their other symptoms and syndromes—that the antidepressant won’t interfere with it. And so along those lines, escitalopram and sertraline have the fewest drug-drug interactions. You essentially don’t need to look up drug-drug interactions if your patient is on one of those two medicines. The other approach is to say let’s choose a medicine that will have favorability with respect to the side effects, will be beneficial for the problems that the patient has. So a classic example is duloxetine is FDA-approved, not just for depression, not just for anxiety, but also for neuropathic and musculoskeletal pain. So here you’re talking about one treatment that will help you with the fact that your patient, their depression will get better; their neuropathic pain will get better if they have migraines—which are often a comorbidity—that will also benefit the neuropathic pain from that as well. And you know you will get two birds with one stone, as it were. And then the tricyclics, as you had asked about, we’ve had a lot of experience with them. They also will benefit in terms of the urinary incontinence problem. They are strongly anticholinergic, and so you can also benefit in terms of preventing the urinary/bowel problems. So really Cymbalta as just sort of son-of-tricyclics, has some fewer side effects, but doesn’t, therefore, cover some of the things that the tricyclics will. MSDF As you alluded to earlier, the depression in MS may largely be a result of immune processes going on—inflammation, cytokines, things like that. So how well do the disease-modifying therapies of MS attack the depression? Dr. Kaplin You know you mentioned cytokines. So that is another way that we know that this is due to the inflammation—the depression in MS—and not just other things, because for instance, interferon-alpha used to treat patients with hepatitis C will cause depression in upwards of 20 to 25% of people who take it, not when they first start it, but within you know a week to two weeks after starting it, you know, then up to eight weeks. So that’s just one cytokine, and in MS, all of the cytokines get activated. And similarly, interferon-beta that’s used, or Copaxone, you know, the ABCR drugs that we’ve used to try to—you know, with great effect since 1993—to slow the exacerbations down in MS; they don’t stop the inflammation, they just alter it. And so not surprisingly, they do not have antidepressant properties. But when you look at something like Tysabri, we actually have not published this yet. We did present it at a MS conference but working in collaboration with Biogen. We are going to publish shortly data that shows that, in a double-blind placebo-controlled study of adding natalizumab to Avonex, or adding placebo to Avonex, those patients who were depressed to begin with show a dramatic and statistically significantly decrease in their depression as a result of the natalizumab. So natalizumab is actually quite a good antidepressant—we have data for it—because that really does shut the inflammation down in the brain, and since that’s causing the depression in MS, that’s what benefits them. MSDF Just to clarify, natalizumab is a good antidepressant in MS. Dr. Kaplin Exactly right. That’s exactly right. Although, you know, it’s good that you clarified that. What’s interesting is that now that people are beginning to appreciate the role of the immune system in idiopathic depression, people are beginning to say, hmm, maybe we should be looking at these anti-inflammatories and seeing if the anti-inflammatories benefit patients with depression. Now, nobody has tried natalizumab, but TNF-alpha inhibitors have actually been tried. There was a study out of Emory looking at using TNF-alpha inhibitors for refractory depression. And I think coming down the road there will be more and more studies that begin to show the role of anti-inflammatories for not all, but some people with refractory depression. MSDF Yes, I’ve seen some studies on anti-inflammatories—traditional ones, NSAIDS sort of things—presented a German study at a neurology conference. Didn’t do too much. Dr. Kaplin Yes. What I can tell you is that not all NSAIDs are created equal. Celecoxib actually now has five studies that are placebo-controlled that have shown its benefit for depression or bipolar disorder. And so when added to antidepressant by itself: No. But when added to fluoxetine or—I can’t remember what other; it might have been sertraline—it clearly had a statistically significant improvement in the depression response, celecoxib. But not all NSAIDs are created the same. MSDF What about non-drug therapies, cognitive behavioral therapy, even just physical activity? And, if someone’s depressed, isn’t it hard to get them up and do physical activity? Dr. Kaplin Well, I’m so glad brought that up, because I’d be remiss to forget that. So all of the data says, look, therapies like cognitive behavioral therapy are effective for mild and moderate depression. Antidepressants are effective as well. The data shows that the antidepressants work quicker, but that the combination of antidepressants and psychotherapy is much better than either one alone. So that’s a crucial issue. And to make sense of what has happened—and often when people are depressed, they’ve been depressed, and that’s caused damage to their professional life and personal life, and having someone help them sort of, depending how long the depression’s been going on, sort of talk them through, coach them through, how to get back up and going. However, in severe depression, you can talk till the cows come home. If your patient is so depressed that basically they have this tunnel vision, and all of the options that are in front of them, the kind of mental flexibility that you need for CBT to work, for instance, it will not work if you patient is really severely depressed. You have to get them started with the antidepressant, which really then serves as a catalyst for the psychotherapy to kick in. And then the aspect of exercise, you can’t really pick a topic related to MS where the answer isn’t exercise. Cognitive impairment, absolutely exercise is beneficial. Depression, exercise is beneficial. It stimulates growth hormones that have positive neurological effects on the CNS, as well as on the peripheral nervous system and body. What I tell people, again, is that if your patient is severely depressed, they’re not going just go back out and start running. So you’ve got to begin to have a plan where you say, look, we’re going to begin this medicine. As you start to be able to have the ability to you know maybe push yourself more than you might usually and just sort of walk down the block, and then you know walk for a mile and then start jogging for a mile and sort of build up to it, that’s very beneficial. MSDF Are there barriers to recognizing and/or treating depression both on the patient’s side and on the physician’s side? Dr. Kaplin The big barrier on the physician’s side is, you know, don’t ask, don’t tell. So if you don’t think of depression, or worse, if the neurologist says, well, I went into neurology not psychiatry, you know, this whole depression thing, that’s not my bailiwick, that’s not my responsibility, you’re missing the fact that this is —first of all, this is very rewarding. There’s nothing else that you could treat that gets a patient from being non-functional, sitting at home, not taking care of the family, not working, in a bed to fully functional, taking care of the family, back at work, like treating the depression can. But also it is. It affects all aspects. It affects the patient’s compliance with all your other medicines. It affects their ability to exercise, etc., etc. So, you know, you’ve got to think of it. And then you have to know something about treating it. One of the big problems with neurologists when they treat depression is that they don’t appreciate the fact that the goal is to get that patient a hundred percent well, because you sort of have this sigma curve where, if you get them 50% well, they’re still in that sort of steep portion of the curve where something comes along—an MS attack or you even a viral infection—and they will slip right down that curve. Whereas, if you can push them way out into the hundred percent well, that’s great. Now you can’t always do it with one medicine. You take the dose as high as the patient can tolerate, where the side effects don’t become worse than the depression you’re trying to treat. But then you might need to add another medicine, an augmenting agent or something, so you’ve got to make sure you recognize it and treat it. And then, what I always tell my colleagues—and my colleagues at Hopkins are wonderful; they do appreciate you know you’re treating the whole patient, not just you know their reflex arcs and that kind of stuff—and what they are very good at is, if the patient is depressed and suicidal, that is the psychiatric equivalent of a heart attack. So then they will get in touch with me and we’ll work together. So if you’ve got someone who’s suicidal, you really want to get in touch. Unless you have the utmost experience and confidence in treating the worst cases of depression, you probably want to get a psychiatrist involved, or mental health professional involved, to help coordinate the care for someone like them. MSDF Very good! I appreciate it. [transition music] MSDF Thank you for listening to Episode Eighty-two of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Carol Cruzan Morton. Msdiscovery.org is part of the nonprofit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is Vice President of Scientific Operations. Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances. [outro music] We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org. For Multiple Sclerosis Discovery, I'm Dan Keller.

Er medicinen til sclerosepatienter overhovedet god, og på hvilket grundlag træffer du og neurologen det rigtige valg? Hvorfor anbefales Rebif, Copaxone, Avonex og lign. stadig, selvom man har vidst i 4 år, at det ikke virker? Rix har mange provokerende spørgsmål og oplysninger fra bagsædet af denne Hyrevogn. Udsendelsen er både lang og stoffet indviklet, men uhyre relevant. Scleroseforeningen burde ifølge Rix undersøge to ting: - hvordan er sygdomsudviklingen hos de patienter som fravælger medicin? - er der overhovedet dokumentation for at de nye mediciner er bedre, eller bruger man stadig “den gamle” fremskrivningsmodel? Links til de undersøgelser der er nævnt i udsendelsen: https://bitly.com/bundles/o_l428721pu/2

Peter på 38 og far til to er overbevist om at han har sclerose. I to år har han kæmpet for at få en diagnose. Lægesystemet har nærmest opgivet, men Peter er sikker på at det ikke er noget psykisk. Kan kroppen virkelig lave så overbevisende symptomer?  Internettet har været en stor hjælp for Peter, men er det måske også for stor viden som spænder ben i mødet med systemet? Hør bl.a.: - kan man bilde sig alt ind?  - hvad kunne du ønske for dig selv? - er dit liv sat på pause? Den problematiske ventetid mellem det første symptom og den endelige diagnose, kan være ligeså svær at tackle, som den første tid efter en alvorlig diagnose. Forskellen er den, at med en diagnose i hånden bliver man taget alvorligt, og pludselig er der masser af hjælp at hente fra systemet og fra ens pårørende. Hvorimod rollen som hypokonder er meget svær at blive sat i og at leve med. Hør også hvorfor Rix er skiftet fra Avonex til Copaxone, og hvad Rix pod har på programmet til efteråret. ... Dette podcast er publiceret med hjælp fra PodConsult.dk og Hindenburg.