Ask the Doctor: Questions from Our Readers
By Dr. Barry A. Hendin
MSAA’s Chief Medical Officer
Q: Do you feel that the COVID-19 vaccine is safe for someone who has had MS for many years?
A: As we have come to realize, COVID-19 infections are potentially dangerous and sometimes fatal. This is especially true for older individuals and for people with medical comorbidities. Although MS itself does not increase the risk of getting COVID-19 or the risk of a bad outcome, risk is heightened in older people with MS, especially when this is associated with increased disability and medical comorbidities.
MSAA recommends COVID-19 vaccination after appropriate discussion with your clinician. I strongly recommend vaccination for my MS patients, with rare exceptions.
With some immunosuppressive therapies such as B-cell depleting therapies, I recommend vaccination prior to initiating treatment, but I don’t try to time vaccinations in patients who are already on disease-modifying therapies. Examples of these types of B-cell depleting therapies include Kesimpta® (ofatumumab), Lemtrada® (alemtuzumab), Ocrevus™ (ocrelizumab), and the experimental medication, Rituxan® (rituximab). Provided your clinician agrees, my recommendation has generally been to roll up your sleeve and get your vaccination as soon as it’s available for you.
Q: I am a young 81-year-old woman and a retired marketing executive. At 36, my first symptom of MS was numbness in my legs causing falls. After decades of various symptoms that would come and go – including numbness and loss of bowel and bladder control – I was finally diagnosed with MS at the age of 70.
Since my diagnosis, I have taken a total of three disease-modifying therapies approved for MS. My advancing symptoms include worsening gait/balance issues and visual problems. I’ve had to give up tennis and golf, and I now use a walker; I’ve also had physical therapy over the years. I’ve been diagnosed with secondary-progressive MS, but my neurologist is hesitant to prescribe another disease-modifying therapy for me at my age, due to potential side effects.
My concern is how rapidly I am declining and what’s next. Any recommendations would be appreciated.
A: Progressive problems with MS are discouraging no matter when in the course of your MS they occur. I certainly understand your concerns. We have improved our ability to reduce injury in the inflammatory stage of MS, but are far less advanced in treating progression. Part of the problem is that the worsening in MS can be due to MS progression or alternatively to medical issues and aging. In the case of worsening, we should first be sure that we have not neglected simple considerations such as exercise and diet and mental health as part of a wellness routine. It’s a time to look at medications to be sure that they are not adding to symptomatology.
The FDA has recommended use of most medications for relapsing forms of MS when there is still evidence of active inflammation, such as a relapse or new MRI lesion in the past year. In situations where there is no evidence of active inflammation or active disease, there are still medications that improve quality of life. We have symptomatic therapies for bladder problems and walking problems and mood problems. We also have supportive therapies such as physical therapy or occupational therapy or speech therapy which can make a real difference in improving function. This may be a time to consider changing strategies with an emphasis on wellness, symptomatic treatments, and physical therapies.
Q: I am an MD (medical doctor) with MS. I take the immunosuppressant Gilenya, and I wanted to ask if you recommend testing for antibodies to confirm seroconversion.
A: For our readers, I will explain that seroconversion occurs when an individual develops antibodies to a foreign (or disease-causing) substance, known as a pathogen, as part of its immune defense. When testing for these antibodies, we are able to see if a virus or other pathogen is currently active within the body – and this includes herpes as well as the JC virus – both of which are described below.
Many of the immunosuppressive disease-modifying therapies, including Gilenya® (fingolimod), increase the risk of herpes reactivation (including the varicella virus, which is the cause of shingles and chickenpox). I generally test for varicella before starting immunosuppressive therapies including Gilenya and vaccinate if the titers are low or absent. I wait approximately four weeks thereafter to start treatment. I don’t test to reassess seroconversion.
However, I suspect that the seroconversion to which you are referring is the conversion from JC virus negative to JC virus positive status. I do not check for seroconversion with JC virus for patients on Gilenya. Progressive multifocal leukoencephalopathy (PML) risk assessments for JC virus status have been worked out for patients taking Tysabri® (natalizumab), but not for patients taking Gilenya. The risk factors for PML and Gilenya appear to be related more to age (over 50) and duration of therapy.
Q: Your website is very helpful. I am 59 years old and I’m having right-sided facial and leg pain. I also feel the need to empty my bladder all of the time. Does MS present at my age, and are these common symptoms?
A: I’m glad to hear that you find our website to be very helpful! Thank you for letting us know.
With regard to your question, MS generally occurs in a young-adult population between 20 and 45 years. But MS can occur in the pediatric population (including young children and adolescents) and also in people at the age of 59 and beyond. There is no age that confers absolute protection from MS. As people age, however, we tend to look for other explanations rather than MS because of the decreased risk in an older population. Please note that in the second question of this column, the writer had experienced symptoms since she was 36, but was not diagnosed until she was 70.
The symptoms that you are experiencing have all occurred in people with MS, but they are not specific to MS. The most common symptom of MS is fatigue. The most common first or presenting symptoms are painful loss of vision (optic neuritis), numbness and/ or weakness in the trunk and limbs (partial transverse myelitis), and double vision with incoordination due to a brain stem or cerebellar lesion.
My recommendation is to seek a good general medical or neurological evaluation that might include an MRI brain scan. This should clarify the origin of your symptoms.
Barry A. Hendin, MD, is a highly accomplished neurologist who specializes in MS. He is the chief medical officer for the Multiple Sclerosis Association of America (MSAA) and has spoken at several of MSAA’s educational programs. After 45 years as a neurologist with Phoenix Neurological Associates, Ltd., Dr. Hendin is now director of the newly created Multiple Sclerosis Center of Arizona. He is also director of the Multiple Sclerosis Clinic at Banner University Medical Center and clinical professor of neurology at the University of Arizona Medical School.
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