Feb 29 2020 Living with MS in Coronavirus COVID-19 Pandemic
MS Living Well values educating people living with MS globally since 2007. In this developing coronavirus pandemic, the goal is provide information specific to those living with MS to help determine your risks and ways to protect yourself. For more info see the CDC’s website on COVID-19.
EVALUATE YOUR RISK:
A. LOCATION: plays a major factor. Higher risk countries are changing: now Europe, United States and Iran have the most new cases (updated March 19, 1920). The situation is changing rapidly so important to be aware of local evolving risk. Many people may be carriers of the virus without symptoms. People can become infected if within 6 feet of someone infected with the coronavirus who coughs or sneezes or by touching surfaces infected and then touching your face, nose or possibly your eyes.
B. IMMUNE STATUS: Many multiple sclerosis medications could put a person at increased risk of serious complications from coronavirus infection including pneumonia or even death. All FDA-approved medications to change the disease course of multiple sclerosis impact the immune system. As a consequence, your ability to fight the viral infection may not be as robust. Many MS medications have been studied to make sure that people can still mount an immune response to new virus while the medication is being taken.
Ocrevus, Gilenya and Mayzent have been associated with an increased risk of respiratory infections in clinical trials and might make MS patients on these medications at increased risk of coronavirus complications. Lemtrada and Mavenclad could also potentially put people with MS at higher risk of serious complications during the year after the last treatment course. Whether Tecfidera, Vumerity or Tysabri treatment would impact susceptibility to coronavirus complications is unclear. Teriflunomide is likely low risk for increased complications. Copaxone and interferons (Avonex, Betaseron, Extavia, Plegridy and Rebif) are likely quite safe as well. NEVER STOP YOUR MS MEDICATION ON YOUR OWN SINCE COULD LEAD TO PERMANENT SEVERE DISABILITY. ALWAYS CONSULT WITH YOUR HEALTHCARE PROVIDERS BEFORE MAKING TREATMENT DECISIONS.
C. AGE and DISABILITY: Elderly patients are at greater risk of death. Overall, the risk of death is estimated at 2-3% of infected COVID-19 patients. People with MS with higher levels of disability such as with moderate to severe weakness in arms and legs may be more vulnerable to coronavirus complications.
A. Avoid close contact with people who are sick.
B. Avoid touching your eyes, nose, and mouth.
C. Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
D. Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe. The virus can linger for a few days on plastic and steel.
E. Facemasks are not recommended by the CDC for people that are healthy. N95 masks are effective but generally reserved for healthcare works treating sick coronavirus patients.
F. Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
G. Stock up on supplies at home if you are at higher risk for complications. As infection rates soar, you will be prepared to avoid public places for shopping.
H. Would avoid travel including airplane flights and cruises. Avoid attending group gatherings such as meetings, religious events and sporting events in higher risk areas.
I. Notify your healthcare providers immediately if having fever, cough or shortness of breath.
Multiple sclerosis experts share invaluable information regarding pregnancy and multiple sclerosis. The podcast covers pregnancy planning for a healthy baby while minimizing risk of multiple sclerosis disease activity. Topics of unplanned pregnancies, birth control and role of high-risk obstetricians addressed. Infertility and the role of in vitro fertilization in woman with MS covered. Genetic risks to children and pros and cons of nursing addressed. Information for men who want to father children reviewed.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:
Claire Riley, MD is the Director of the Multiple Sclerosis Center at Columbia University Irving Medical Center since January 2012 and an Assistant Professor of Neurology. She earned an undergraduate degree from Dartmouth College and a medical degree from Vagelos College of Physicians and Surgeons (VP&S) at Columbia University. She completed her residency in neurology and 2-year clinical fellowship in multiple sclerosis at Columbia University Irving Medical Center. She was previously an attending neurologist and assistant professor in the Yale MS Center in New Haven, CT. Dr. Riley regularly teaches medical students, residents and fellows in the MS clinic. She is also an investigator in clinical trials related to multiple sclerosis.
Amy Perrin Ross, APN, MSN, CNRN, MSCN is a board certified neuroscience nurse and the Neuroscience Program coordinator at Loyola University Medical Center in Maywood, IL. She obtained her BSN and MSN from Loyola University Marcella Niehoff School of Nursing, Chicago, IL. As an advanced practice nurse, she coordinates the multiple sclerosis clinic at Loyola University Medical Center in Maywood, Illinois. In her role at Loyola, she has coordinated multiple clinical research trials in multiple sclerosis. She is a Past President of the International Organization of Multiple Sclerosis Nurses. She has authored numerous articles and book chapters on multiple sclerosis. In addition, she has served as a clinical nurse consultant with the National Multiple Sclerosis Society, a member of the Health Care Advisory Council for the Multiple Sclerosis Association of America, and a board member of the Consortium of Multiple Sclerosis Centers. She has been an invited speaker at national and international meetings and conferences and has been very active in neuroscience clinical research for over 20 years.
Oct 30 2019 Vumerity: New Oral MS Medication FDA-approved
Vumerity is a twice a day oral medication for patients with multiple sclerosis. The active ingredient of Vumerity is diroximel fumarate, which is rapidly converted to monomethyl fumarate in the body. Similarly dimethyl fumarate (Tecfidera) is also converted to monomethyl fumarate. Therefore, Vumerity would be expected to the same benefits as Tecfidera on multiple sclerosis such as 53% reduction of relapses, 38% reduction in likelihood of disability progression and 90% reduction on active contrast MRI lesions (DEFINE trial).
Full results of the EVOLVE-MS trials are pending including the EVOLVE-MS-1 study, a Phase 3, open-label, two-year safety study and the EVOLVE-MS-2 study, a Phase 3, five-week randomized, prospective, double-blind, multi-center study that assessed the gastrointestinal (GI) tolerability of VUMERITY and TECFIDERA using self-administered GI questionnaires. Based on preliminary results of EVOLVE-MS-1 study that I presented at ECTRIMS in September 2019, approximately 30% of Vumerity had gastrointestinal side effect but less than 1% discontinue due to this side effect. Lymphocyte (type of white blood cell) monitor is important to reduce potential risk of PML, a brain viral infection. Thanks to all of our patients who participated in the clinical trials.
Multiple sclerosis experts share advice on how to substantially improve your care when interacting with your neurologist. Key insights to develop trust and understanding with your doctor reviewed. Compelling info to help you advocate and communicate your desires and needs. Specific ways to make the most of your appointments addressed. Difficult questions are tackled such as progressive disease and long-term planning. Managing MS symptoms and wellness highlighted. Benefits of reviewing MRI images in the exam room outlined. Excellent tips on how to access free medication and MRI programs for people who are uninsured or have high out-of-pocket costs.
Barry Singer MD, Director of The MS Center of Innovations in Care at Missouri Baptist Medical Center interviews:
Flavia Nelson MD, Associate Professor of Neurology, Director Multiple Sclerosis Division at University of Minnesota in Minneapolis. She completed her residency and multiple sclerosis fellowship at University of Texas Health Science Center in Houston, Texas. Dr. Nelson has served as Chair of Department of Defense Panel for Multiple Sclerosis Research Program, committee member on Consortium of MS Centers MRI Guidelines Committee and Chair of International Advisory Board on Brain Atrophy and MS (2016).
Timothy West MD, MS Neurologist, Rocky Mountain Multiple Sclerosis Clinic in Salt Lake City, Utah. Dr. West completed medical school at the University of California-San Francisco (UCSF) and fulfilled his residency in neurology at UCSF. He has had extensive experience and research in the area of MS, including at the Cleveland Clinic Lou Ruvo Center for Brain Health in Nevada, the Sansum Clinic in California, and the UCSF MS Center in California.
Oct 10 2019 MS Living Well Podcast 4: Cannabis & MS
Multiple sclerosis often causes nerve pain with burning and pins-needles sensations and spasticity associated with muscle tightness and cramping. The specific role of medical marijuana components including THC and CBD in MS in alleviating these MS symptoms addressed. Information regarding which MS patients are more likely to benefit from cannabis are reviewed in depth. Risks and concerns of cannabis use in MS addressed. All national, state and local laws should always be followed.
Barry Singer, MD, Director of The MS Center for Innovations in Care, interviews:
Allen Bowling, M.D., Ph.D. , MS neurologist at the Colorado Neurological Institute, Denver, Colorado
Jacob Sosnoff, Ph.D., Associate Professor in Department of Kinesiology and Community Health, University of Illinois at Urbana-Champaign.
At ECTRIMS in Stockholm in September 2019, Dr. Barry Singer was interviewed by Shift.ms about a way to routinely monitor someone’s cognition at regular neurology appointments. Using an iPad, the rate at which someone processes information (processing speed test) can be measured in just 2 minutes and then immediately compared to people without multiple sclerosis with same age and education background. Approximately half of people with MS had trouble with short-term memory loss, multitasking problems and/or word finding difficulties. If someone living with MS performs well, great news and continue treatment. If losing ground on the test, best to review MRI imaging and possibly consider other treatment options.
Country living far from large cities has wonderful advantages, but can present some unique challenges to receive optimal multiple sclerosis care. This podcast addresses when it’s time to drive to see a MS specialist. MS experts share their wisdom on various strategies to access the most current treatments while still enjoying life in countryside from the plains to the mountains. Creative ways of coordinating care between local heathcare providers and MS specialists in MS centers described. Emerging telemedicine options reviewed to get remote care.
Barry Singer, MD, Director of The MS Center for Innovations in Care, interviews:
Susan Scarberry, MD, Sanford Medical Center, Fargo, North Dakota. Clinical Associate Professor of Medicine at the University of North Dakota School of Medicine and Health Sciences.
Gabriel Pardo, MD, Director, OMRF Multiple Sclerosis Center of Excellence, Oklahoma City.
Remyelination: Repairing Multiple Sclerosis
Myelin is the coating on the nerve cells (neurons) of the nervous system that allows messages to travel rapidly in our body. Myelin wrapped around the neurons also keeps neurons healthy. In multiple sclerosis, the immune system attacks myelin disrupting electrical signals and making neurons vulnerable to chronic damage. Remyelination is the strategy to recoat the nerves with new myelin. Myelin-making cells called oligodendrocytes (“oligos”) are described. The podcast reviews recent laboratory breakthroughs in screening for new treatments to turn on immature oligos to repair myelin. The exciting initial steps are presented regarding the transition from the laboratory research into clinical trials with multiple sclerosis patients.
Barry Singer, MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center interviews:
Ari J. Green, MD, Chief of Division of Neuroinflammation and Glial Biology, Medical Director of the Multiple Sclerosis and Neuroinflammation Center, Debbie and Andy Rachleff Distinguished Professor of Neurology, Departments of Neurology and Ophthalmology, University of California San Francisco.
Sep 3 2019 MS Living Well Podcast 1. Winning Strategies in Multiple Sclerosis Treatment: Don’t Underestimate the Disease.
Treatment approaches to multiple sclerosis continue to change. Over the past quarter of a century, MS went from an untreatable disease to a disease responsive to a broad array of oral, intravenous and self-injected medications. Greater long-term disease control is now possible for more people living with MS. However, undertreatment can result in significant physical disability including imbalance, weakness, visual loss, incontinence and pain and significant cognitive impairment including short-term memory loss, multitasking impairment and word-finding problems. This podcast outlines different treatment strategies to maximize quality of life long-term to realize your individual goals with the least disability. Information is presented on which people with MS might be at increased risk of disability and need early use of a highly effective medication. Treatment safety is weighed against the treatment benefits and risk of long-term disability.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews two amazing MS specialists who are also phenomenal patient advocates:
Heidi Crayton MD, Director of The MS Center of Greater Washington in the Virginia suburbs of Washington, DC. Dr. Crayton completed her neurology residency and multiple sclerosis fellowship at Georgetown University Hospital. She is a national leader in MS treatment and clinical trial investigator. For more on Dr. Crayton.
Aaron Boster, MD, is an MS expert at Ohio Health in Columbus, Ohio. Dr. Boster completed his neurology residency at the University of Michigan in Ann Arbor and a fellowship focused on clinical neuroimmunology and multiple sclerosis at Wayne State University in Detroit. Dr. Boster continues to be active in clinical research, authoring academic publications and lecturing globally. For more on Dr. Boster.
Join us for a free educational evening at Missouri Baptist Medical Center for The MS Center for Innovations in Care annual “MS Breakthroughs” program on Oct 22, 2019. The latest groundbreaking global research including treatment updates will be presented. Future developments to better monitor MS disease activity in patients will be shared. Myelin-repair strategies will also be highlighted.
Representatives of the Multiple Sclerosis Association of America, National MS Society, Missouri Baptist Therapy Services and other MS care partners will be present.
Formal presentation will be from 6-7:30 PM followed by a 30 minute question and answer session. RSVP information coming…