Our immune system includes a type of cell called lymphocytes. T lymphocytes target other cells such as cells infected with viruses or cancerous cells. They are called “T” cells since they mature in the thymus gland in the upper chest. Normally T cells that would attack our own cells are destroyed in the thymus gland before being released into the circulation. In autoimmune diseases such as multiple sclerosis, these T cells escape and can lead to the immune attack on myelin.
B cells mature in the bone marrow in humans, but were named after a specialized organ where B cells mature in birds known as the bursa of Fabricius. B cells can change into plasma cells which make antibodies. Antibodies are like targeted arrows that can help attack germs such as viruses or bacteria that are invading our bodies. In multiple sclerosis, B cells turn against their human by creating antibodies that attack myelin and revving up autoimmune T cells.
Role of T and B cells in Vaccination:
Vaccines work by imitating a serious infection. Vaccines can cause minor symptoms, but do not cause the actual disease. The vaccine triggers the development of specific-targeted T and B cells that remember the infection. When someone is then exposed to the real life-threatening virus or bacteria in the future, they can mount a highly effective defense against the infection due to these “memory” T and B cells. For example, children are vaccinated with a weakened, live chicken pox virus called the varicella-zoster virus. The immune system then develops T cells and antibodies specific for this varicella virus. The vaccine has been shown reduce the risk of getting chicken pox later in life by 92%. If someone is immunosuppressed, important to avoid live, weakened (attenuated) viruses.
Most vaccines are inactivated vaccines which means they do not contain live viruses or bacteria. Vaccines that inject killed whole virus include polio, hepatitis B and rabies. Many inactivated vaccines include only sugar molecules (polysaccharides) that are found on the surface of bacteria or surface proteins that are found on viruses. These components of the infectious agent lack the ability to replicate since they do not contain disease-spreading genetic material (RNA or DNA).
For COVID-19, the Pfizer and Moderna vaccines are mRNA vaccines. The mRNA contains instructions for our own body to make a harmless “spike” protein. This spike protein is on the surface of the COVID-19 virus. The spikes on the surface of this COVID-19 coronavirus creates a “corona” (derived from the latin word for crown). The mRNA is surround by a lipid (fatty) nanoparticle that allows it to enter cells of the body when injected in the muscle. Once mRNA is in the cells, the cells can create their own spike proteins on their surface. The body’s immune system that reacts to these foreign spike proteins leading to immunity with memory T and B cells. These COVID-19 vaccinations result in a robust immune response to this spike protein that provides up to 95% immunity from the real COVID-19 infection, caused by the SARS-CoV-2 virus.
The AstraZeneca and Sputnik V vaccines use a type of virus called an adenovirus to insert DNA into the cell nucleus. The double-stranded DNA does not get into our own DNA, however. The DNA strand allows the cell to also make only the spike protein. The DNA in the adenovirus has been altered so the adenovirus lacks to the ability to replicate (divide) in the body.
Disease-Modifying Therapies (DMTs) and Response to Vaccines:
All decisions regarding taking a vaccine with multiple sclerosis should be made in consultation with your healthcare providers.
Multiple sclerosis medications can impact your body’s ability to mount an immune response to a vaccine. Most trials looking at responses to vaccines in MS patients measure antibodies in the blood which is driven by B cell immune response. You may be able to mount an effective T cell response to a virus, but much harder to measure. Different MS medications (DMTs) might weaken your ability to develop a protective level of immunity from a vaccine. In a study of 152 people performed in Norway, protection against H1N1 flu virus at 6 months post-vaccination occurred in 86% of those MS patients treated with Copaxone (glatiramer acetate), 84% of patients on interferon, 58% on Gilenya (fingolimod) and 75% on Tysabri (natalizumab) and 94% of healthy people not on MS medications.
Live, weakened virus vaccines should be avoided on many multiple sclerosis DMTs including Ocrevus (ocrelizumab), Kesimpta (ofatumumab), Gilenya (fingolimod), Mayzent (siponimod), Zeposia (ozanimod) and Mavenclad (cladribine) per their prescribing information. At this point, the leading vaccines for COVID-19 do not contain live, replicating virus. The impact of each DMT on the protective response to COVID-19 vaccination is unknown. Both antibodies and T cell responses likely play a role in being fully vaccinated again the COVID-19 virus.
Below are some of the trials that have looked at vaccine responses to DMTs (Link for full review):
Aubagio (teriflunomide): The TERIVA trial examined flu vaccine responses to both Aubagio and interferon beta-1. Effective vaccination based on antibodies was 97% to the flu-vaccine for H1N1 and B strains and 77% for H3N2.
Tecfidera (dimethyl fumarate): In another study of 71 MS patients (38 on Tecfidera and 33 on interferon), antibody response to specific pneumococcal strain vaccines was 84-95% on Tecfidera and 88-97% on interferon. 47% of MS patients on Tecfidera and 42% of patients on interferon made protective antibody levels at 4 weeks to a meningococcal vaccine.
Gilenya (fingolimod): A trial of 138 MS patients randomized to placebo or Gilenya for 12 weeks to examine response to a seasonal flu vaccine. 54% of MS patients at 3 weeks after the flu vaccine mounted a protective antibody response on Gilenya while 85% on placebo. At 6 weeks post-vaccination, 43% of Gilenya-treated patients made a response but 75% on placebo.
Interferons (class includes Avonex, Betaseron (Betaferon), Rebif, Extavia and Plegridy): As above, the TERIVA trial examined flu vaccine responses to both interferon beta-1 and Aubagio. Effective flu vaccination based on antibodies occurred in 91-98% of multiple sclerosis patients depending on the flu strain.
Mayzent (sipinomod): Flu vaccination was studied prior to Mayzent treatment, during treatment and with treatment interruption in 120 healthy volunteers. For Influenza A California strain, protective antibody levels occurred in 86.7% of subjects on placebo, 92.9% vaccinated preceding Mayzent, 74.1% during Mayzent treatment and 71.4% with interrupted Mayzent treatment. For Influenza B Massachusetts strain, response rates were much less: 43.3% on placebo, 50.0% preceding, 25.9% during and 28.6% on interrupted Mayzent treatment. 100% of subjects immunized with pneumococcal vaccination prior or during Mayzent 2 mg treatment mounted protective antibody levels.
Ocrevus (ocrelizumab): In the VELOCE trial, MS patients exposed to various vaccines were studied. Flu-virus antibody responses were 56% to 80% on Ocrevus while 75-90% on placebo or interferon. In addition, antibody response rates to pneumococcal vaccination was reduced. Antibody (humeral) responses to vaccines rely on B cells and plasma cells.
Being diagnosed and living with multiple sclerosis is often overwhelming. Your MS journey might be challenging, frustrating and depressing at times. On the bright side, superb MS care is available. This podcast lays out ways that you can take charge of MS and get the care you deserve. Topics include finding the right neurologist for you and how to get reliable MS information. Improve your communication with your doctor regarding worsening symptoms, progressive disease, MRI imaging and medication risks. Making shared decisions regarding treatment with your neurologist highlighted. If you feel more comfortable sticking with the treatment plan called “adherence,” you will be better off in keeping your MS in check. Financial assistance for treatments, MRI and office visits outlined. Expert information reviewed on diet, vitamin D, smoking, alcohol and exercise.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:
Cathy Chester was diagnosed with multiple sclerosis in 1986 and has become a leading national MS patient advocate. Cathy is a graduate of Boston College with a Bachelor of Arts in English and Business and The Alfus Patient Advocate Certificate Program at The University of Miami. Cathy’s An Empowered Spirit was named Top Health Blog by Healthline and Top Multiple Sclerosis Blog by Healthline and WEGO Health for several years. Cathy is a regular contributor to MultipleSclerosis.net and Multiple Sclerosis News Today.
Bhupendra Khatri MD is the founding medical director of the Regional MS Center of the Center for Neurological Disorders in Milwaukee, one of the largest multiple sclerosis centers in the U.S. Dr. Khatri completed his residency in neurology at the Medical College of Wisconsin and fellowship at University of California in San Francisco. He has been a principal investigator in numerous clinical trials, as well as an invited speaker at both national and international conferences. He has published over 55 papers in peer-reviewed journals and has contributed chapters to six books. In 2015 he was honored with the National Multiple Sclerosis Society Lifetime Achievement Award. He is an accomplished book author and published the award-winning bestselling book, “Healing the Soul, Unexpected Stories of Courage, Hope and the Power of Mind.”
Struggling with MS fatigue? You aren’t alone. Approximately 90% of people living with multiple sclerosis deal with fatigue. An overwhelming sense of tiredness can be disruptive at work and take away from your family time and social life. This podcast dives into the different causes of MS fatigue including disease impact on nervous system, medications and poor sleep. Approaches to improve both mental and motor fatigue are highlighted including energy conservation strategies, exercise and workplace changes. Fixing sleep issues can substantially help fatigue. Treatment options reviewed for causes of poor sleep including anxiety, restless legs, leg cramps, need to urinate overnight and sleep apnea. Medication options for MS fatigue are reviewed including amantadine, modafinil, armodafinil and amphetamines.
Randy from Must Stop MS! was diagnosed with multiple sclerosis in November 2012. Initially he was worried about his future: wheelchair? providing for his family? Knowing how he felt after the diagnosis led him to become an advocate for this disease. He started Must Stop MS! on Facebook to provide support, new information regarding MS, and to raise awareness of the disease. Must Stop MS! quickly spread to Twitter and Instagram. He started a weekly Twitter chat named #ChatMS that occurs every Monday at 7pm EST. His mission is to bring the MS community together to help raise awareness, support each other, and provide hope. Randy won’t stop until “we get that cure we all need.”
Enrique Alvarez MD PhD is an Assistant Professor of Neurology at the University of Colorado School of Medicine and cares for patients multiple sclerosis patients at the Rocky Mountain MS Center. He was a graduate of the Medical Scientist Training program at the University of Colorado Denver and completed his neurology residency and neuroimmunology fellowship at Washington University in St. Louis. He has a special interest in using biomarkers to customize treatments and patient care
Sexual health is an important part of quality of life for many people. Multiple sclerosis can cause new challenges and disrupt sexual relationships. Positioning options, including pillows and slings, are reviewed that can help overcome weakness and stiffness of legs. Factors that can be reduce a woman’s libido, or sexual drive, are addressed such as medications and hormone levels. Ways to achieve a satisfying sexual relationship with disability from multiple sclerosis are discussed in terms of intimacy and foreplay. Detailed solutions are presented such as stimulation and lubrication to overcome decreased or painful sensations with intercourse.
Up to 40% of men with multiple sclerosis can have low testosterone which can decrease libido. An array of testosterone replacement options highlighted depending on whether a man still wants to father children or not. Erectile dysfunction treatments discussed in depth including oral pills, intra-urethral suppositories, self-injection therapies, vacuum erection devices and penile implants.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:
Heather Raznick MSW, LCSW is a psychotherapist in clinical practice in St. Louis. She obtained a Masters in Social Work from Washington University. She trained at the world-renowned Masters and Johnson Institute, where she studied clinical sex therapy under the direct supervision of legendary sexologist Dr. William Masters. She provides academic and clinical training to residents and medical students as well as lectures at several area hospitals. Heather shares her expertise on sexuality and wellness with community groups and organizations. She also frequently appears on radio interviews and television programs as a guest expert. She is a member and has received certifications in multiple organizations including American Association of Sex Educators, Counselors and Therapists and the International Society for the Study of Women’s Sexual Health.
Etai Goldenberg MD is the Director of Men’s Health at Urology of St. Louis. Dr. Goldenberg completed his undergraduate degree at University of Michigan and medical school at Wayne State University School of Medicine in Detroit. His urological surgery residency was obtained at Washington University in St. Louis. In addition, he completed a fellowship in male reproduction and sexual health at the Smith Institute for Urology in New York City. He specializes in male sexual health, male reproduction, microsurgery, prosthetic urology and testosterone replacement.
Trouble with your bladder? Most people with multiple sclerosis have bladder issues. Penelope shares her personal bladder challenges with urgency, trouble emptying her bladder and use of catheters. Rather than being embarrassed, Penelope gives advice on when to speak up to get needed medical care and how to cope (laughter helps). Dr. Travis Bullock then explains what happens to the bladder in MS. Treatment strategies for bladder urgency reviewed including pelvic exercises, medications and Botox injections. Options for trouble emptying bladder highlighted including self-catherization and suprapubic catheters. Ways to reduce frequent urinary tract infections (UTIs) discussed including methenamine, d-mannose and cranberry tablets.
Barry Singer MD, Director of The MS Center for Innovations in Care, interviews:
Penelope is the author and founder of Positive Living with MS where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey.
Travis Bullock MD is a urologist with expertise in multiple sclerosis at Urology of St. Louis. He completed his urologic surgery residency at Washington University School of Medicine in St. Louis and fellowship in Female Urology, Neuro-urology and Pelvic Floor Reconstruction at the Center for Continence Care and Female Urology at Metropolitan Urologic Specialists in Minneapolis, Minnesota.
This podcast explores cognitive issues in multiple sclerosis. Caroline Craven aka The Girl With MS shares the impact of MS on her short-term memory, word-finding ability and multitasking skills. She talks about the role of stress, sleep and mood have on her cognition. Caroline reviews how she copes with these changes partially through diet, exercise and good sleep. Abbey Hughes PhD, a rehabilitation psychologist from John Hopkins, outlines ways to deal with memory and multitasking obstacles for those living with MS. Strategies to help cognitive functioning are shared including task completion tips, journal use, brain empowering apps, speech therapy, stress reduction and depression control. Screening tools to check for cognitive problems such as brain processing speed reviewed. MS brain changes and key ways to maintain brain health and better cognition emphasized.
Barry Singer MD, Director of The MS Center for Innovations in Care interviews:
Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.
Abbey Hughes PhD is a clinical psychologist with expertise in rehabilitation psychology and multiple sclerosis rehabilitation. She is an Assistant Professor of Physical Medicine and Rehabilitation at John Hopkins. Her clinical and research interests include the assessment, treatment and management of psychological and cognitive difficulties associated with multiple sclerosis including adjustment to disability, sleep disturbance, fatigue, depression, anxiety, and problems with thinking or memory.
Multiple sclerosis causes anxiety for many people living with the condition. With the COVID-19 pandemic, added anxiety comes from people with MS or their family members being furloughed or terminated from employment. How am I going to stay on my medications or afford them? Will I still be able to see my doctor if I lose my health insurance? How can I pay for an MRI scan?
In United States, the disease-modifying medications are generally free for those patients without insurance or underinsured if not on government insurance (Medicare or Medicaid). Your healthcare provider simply needs to submit a prescription (called a service request form or SRF) to the pharmaceutical company that makes the MS medication to access the financial assistance. These programs have no co-pay if you qualify and apply to people already on a specific disease-modifying MS medication or starting a new medication.
For those people on Medicare, independent charitable patient assistance programs can help with co-pay assistance since the U.S. government does not allow the pharmaceutical companies to provide medications with no co-pay. The pharmaceutical company that makes your medication can help you figure out which patient assistance programs to apply for co-pay assistance. If your income is too high, you may not qualify for patient assistance with Medicare (which tends to occur when retirement income is too high or the person with MS is on Social Security Disability while their spouse working).
To cover medications, doctor visits and medications, Medicaid might be an option if you financially qualify depending on your own state’s requirements. Most large healthcare organizations offer charitable care for those in need which generally requires an application to coverage/assistance for doctor appointments, medication infusion costs and MRI scans.
The best resource for MRI scans is the MSAA MRI Access Fund. There’s an online application for free MRI scans of the brain and cervical spinal cord for people with multiple sclerosis or in the process of trying to diagnose MS. The MSAA can also help with MRI scan costs of completed scans. The MSAA MRI Access Fund is supported by Biogen and Sanofi Genzyme. MSAA also has durable medical equipment assistance for items from cooling vests to wheelchairs.
A great resource for medication cost savings for medications is GoodRx. After entering the medication name and your ZIP code, a list of pharmacies and price at each pharmacy is listed plus coupons are generated. GoodRx can save hundreds of dollars on a single medication in one month.
Another option is participating in a clinical trial. Most relapsing clinical trials currently do not involve placebo so you would receive active treatment, although may be experimental. MRI scans, study visits, labs and sometimes transportation costs to centers are covered by the study and free to MS patients participating in the trial.
Never assume you don’t have options. Please reach out to your healthcare team who are committed to keeping you on track for your MS care!
Telemedicine is use of electronic technology to allow exchange of health information between locations. The use of telemedicine has rapidly become the standard for patient visits with their neurologists since March 2020. To reduce the risk of COVID-19 exposure by going to a doctor’s office, remote appointments have become routine with use of phones, tablets and computers. Dr. Krieger from New York City and Dr. Okai from Dallas discuss their early insights to advantages and disadvantages of the new virtual appointments for their patients with multiple sclerosis. Tips to navigate the technology and improve your virtual visit shared. These MS experts share their advice on whether you should have a virtual appointment now or wait for an in-office appointment. The neurologists also speculate on the future of telemedicine.
Barry Singer MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center, interviews:
Annette Okai, MD is a MS specialist and Medical Director of the Baylor Scott & White Multiple Sclerosis Treatment Center in Dallas, Texas. She completed her residency in Neurology in 2006 and fellowship in Neuroimmunology in 2008. Dr. Okai interests include studying multiple sclerosis in diverse populations and the utilization of conventional and novel MRI techniques in multiple sclerosis.
Stephen Krieger, MD is a MS specialist at the Corrinne Goldsmith Dickinson Center for MS at Mount Sinai in New York. He is an Associate Professor of Neurology at the Icahn School of Medicine at Mount Sinai and Director of the Neurology Residency Training Program. He created a topographical model to better understand MS disease course that has been adopted globally.
At the height of the COVID-19 pandemic, neurologists from major multiple sclerosis centers from Barcelona, Spain and Rome, Italy share their experiences on the front lines. Spain and Italy had the highest rates of COVID-19 infections until surpassed by the United States. These MS specialists share how they are supporting and advising patients during this crisis. Virtual appointments and changes to MS treatment reviewed. The neurologists share what happened to people with MS that were infected with this coronavirus in Italy and Spain.
Barry Singer MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center interviews:
Giovanna Borriello, MD, MS Neurologist working at the MS Center in the academic Hospital Sant’ Andrea in Rome, Italy since 2001. She had been an investigator over 40 clinical trials on multiple sclerosis including trials focused on new treatments. In 2011, she founded a non-profit organization, called “Semper Mobilis” Onlus, for people living with MS, to give them reliable and updated information, to assist their caregivers with psychological and nursing support in the management of the disease and to offer best practices to healthcare professionals in the multidisciplinary setting with specific courses and update activities.
Jaume Sastre-Garriga MD, PhD is the Deputy director of Cemcat, The MS Center of Catalonia in Barcelona, Spain. Dr. Jaume Sastre-Garriga received his MD at the University of Barcelona and his PhD at the Universitat Autònoma de Barcelona. He trained as a neurologist at the Neurology Department, Vall d’Hebron University Hospital. He serves on the executive board of RIMS (Rehabilitation in Multiple Sclerosis) and the steering committee for MAGNIMS, the European networks for best practice and research in MS rehabilitation and MS MRI imaging, respectively. Dr. Sastre-Garriga has published over 100 scientific articles in the past decade and serves on the Editorial Board of the Multiple Sclerosis Journal.
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.