Ask the Doctor: COVID-19 Vaccine Appears Safe for People with MS
By Dr. Barry A. Hendin
MSAA’s Chief Medical Officer
Q: Are the COVID vaccines safe for someone with MS, particularly for my type, relapsing-remitting MS? Could the vaccine cause a relapse or pseudo-relapse? Also, is one brand of vaccine safer or better than another for people with MS – and is getting the one-time vaccine an advantage over the ones that require two separate injections?
A: Given the serious nature and risks associated with COVID-19, I along with MSAA, support the MS community getting the COVID vaccine as soon as individuals are eligible, in coordination with one’s healthcare provider.
The COVID vaccine appears safe for people with MS, regardless of their MS type. I do not recommend one specific vaccine; I recommend that you get the first one that you are offered. The vaccine is very unlikely to cause a relapse. A brief pseudo relapse is possible if you develop a fever, post injection, but it is unlikely.
Q: Currently I am fine and I have no problems. My question is, do I need to take medication for MS now… or because I am 60 and have remained free of symptoms for 20 years, is it safe to assume I will not have any future episodes of MS? If I do not have any serious disabling factors by now, what are the odds I would have a disabling episode in the future?
For background information, I was diagnosed with MS in 2001 and prescribed one of the disease-modifying treatments (DMTs). I stopped taking the DMT in 2006. I have not had any problems since 2001. Due to a breast cancer diagnosis in 2020, I started taking tamoxifen and I had my first ocular migraine. A CT and MRI indicated multiple TIAs. After many tests, my new neurologist decided it wasn’t TIAs that caused the migraine – he thought it could be tamoxifen, MS, or cancer. We are ruling out cancer. I feel it was tamoxifen that caused the migraine. I’ve had no active activity on the MRI or CT – just showed scattered white spots that resembled TIAs but my doctor felt they were related to MS. My neurologist compared scans from 2001 and said that many white spots on the 2020 MRI show on the 2001 MRI.
A: I want to express my happiness regarding how well you are doing 20 years after your diagnosis of MS. There are at least two issues for me to address. First, the diagnosis of MS sounds as if it may have been questioned initially. If there is any doubt regarding the diagnosis, this can be a good time to reassess. (If you don’t have MS, of course, you won’t want to be on an MS medication!)
Second, you are correct that we need to rethink the rationale for continuing DMTs as people age: the benefit of our treatments may decline and the risks may increase with aging. For people with MS in their 60’s and older, the risk of relapse declines but the risk doesn’t disappear entirely. I suggest a discussion with your MS clinician before making a final decision. As a side note, an important study is currently underway at the University of Colorado to address questions regarding the benefits of DMTs in MS in an aging patient population.
Q: I am 62 years old and was diagnosed with RRMS at the age of 28. I have had a few exacerbations, primarily optic neuritis three times and tingling and diminished use of my hands after my first child was born when I was 32. In the last couple of years, I have seen problems with my walking, and looking through my doctors notes from 2018 (I requested all my records), she indicated I might be starting to experience secondary-progressive MS. I had Betaseron when I was 30 years old for a year. An MRI after one year showed a new lesion and because of the stress of giving myself needles, I chose to quit treatment.
Is it realistic for me to start looking at a DMT to slow down any potential degradation? I am very healthy. I do have some spondylitis in my hips, for which I am actively doing physiotherapy and exercise programs. I was extremely active up until two years ago, when my walking started to be affected. Since then, my physiotherapist has realigned my hips and my back, which has helped my walking by leaps and bounds.
I will be seeing my physiotherapist for my annual appointment and would like to explore a DMT that will help keep me strong and prevent my lesions from worsening. Do you have any suggestions as to what I should ask and what I should further explore?
A: During the past 28 years we have been increasingly successful at treating relapsing multiple sclerosis. Our successes have been primarily against the inflammatory aspects of MS, including relapse reduction. We have been less successful, unfortunately, in diagnosing and treating secondary progression.
Most of our DMTs are indicated for active secondary progression, which is a phase of relapsing MS in which there is still active inflammation (meaning that clinical relapses or new MRI activity are still occurring). In secondary progression without recent activity, people with MS still benefit from a general wellness program including exercise and diet. This is a good time for your physiotherapist to assess gait. Your neurologist may also want to consider a symptomatic medication for gait improvement, such as 4-amino pyridine.
Q: How do I know if I’m having an MS relapse?
A: It’s not always easy to determine if symptoms that you’re having are due to a relapse, but there are some rules. A relapse is defined as a new neurological deficit or a marked worsening in an old deficit, lasting at least 24 hours and separated by at least 30 days from the last event (and not better explained by something else). Brief symptoms are probably not due to a relapse.
Transient symptoms associated with overheating or a febrile illness are also unlikely to be due to a true relapse. Symptoms associated with overheating or fever are called “pseudo-relapses” and should resolve when your temperature returns to normal. These events are temperature-related and not due to a new MS attack.
An MRI scan can sometimes, but not always, help to answer the question. In the end, the determination is best assessed between you and your clinician. When in doubt, consult with your clinician either by telephone or in person.
Q: Why is fatigue so common in MS and how can I manage it?
A: You are correct that the most common symptom for people with MS is fatigue. The cause is probably different from person to person. The cause of primary fatigue in MS has been debated. It may be related in part to inflammation and in part to the increased effort required to accomplish tasks for some individuals.
There is also a type of fatigue that is labeled secondary fatigue. This may be due to a number of treatable factors such as poor sleep, depression, lack of exercise, or medications. Treatment for secondary fatigue is aimed at a specific problem causing the fatigue. Your treatment would be aimed at restoring sleep, treating depression, starting an exercise program, or assessing medication.
Although a variety of medications have been used for MS fatigue, including amantadine, modafinil, and armodafinil, a general wellness program emphasizing exercise, diet, and mental health should be central to the treatment of fatigue.
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.
Please submit questions for Ask the Doctor via email to askdr@mymsaa.org