The email I was hoping to get three weeks ago has just arrived in my inbox. The researchers running the clinical trial I skipped last week have finally come to the conclusion that maybe non-essential visits to the NIH (National Institutes of Health) are not such a good idea, after all.
The letter then went on to confirm that the MS drug I’ve been taking makes me moderately more immune-compromised, and therefore more vulnerable to Covid-19. Fortunately, I hadn’t waited for notification from the NIH, or from my neurologist. My dear friend MD (not a doctor) had prompted me to do a risk benefit analysis of taking Tecfidera in the age of Covid-19. I already knew Tecfidera is fairly useless at this stage in my disease, so it didn’t have any benefit to balance even the faintest risk. I’ve been off Tecfidera for three weeks now, and only regret that I didn’t get off it sooner.
I did go through the motions and wrote to “ask” my neurologist if he thought discontinuing my MS medication would be a good idea.
“Hello. I was wondering what you would think about my dropping Tecfidera? At this point I am more scared of Covid-19 than of MS. If Tecfidera lowers my immunity to Covid-19 even slightly, that’s not worth it to me, especially since there is little evidence Tecfidera is very effective against late stage MS. My first priority is to stay alive. What would you do, if you were me?”
I’d been off Tecfidera for two days when I got his response, “Although Tecfidera has not drop your lymphocyte but I can not say for sure it does not weakened your immune system. I understand and agree with you on holding it for now.”
One of the perks of being a lab rat is that you get to learn wonderful information from the leading minds in the field. I’d like to share the passage in the email from the principal investigator of my NIH trial. The passage outlines the role various MS medications play in potentially heightening vulnerability to threats like Covid-19. Perhaps this assessment will inspire others on MS medications to “ask” their neurologist about continuing on their drug:
“What to do if your private neurologist is prescribing you a multiple sclerosis (MS) drug.
Not all MS drugs are the same when it comes to their effect on immune system and specifically, on the part of immune system that is important for fighting viral infections such as the coronavirus.
Based on current knowledge, I believe that it is safe to start or continue any preparation of interferon beta (i.e., Avonex, Rebif, Betaseron, Extavia, Plegridy). In fact, even though we do not know if interferon beta preparations inhibit COVID19 virus, these drugs do inhibit similar viruses in a test tube and likely in humans. Therefore, there is theoretical possibility that these drugs may in fact be beneficial.
Similarly, glatiramer preparations (i.e., Copaxone, Glatopa, Glatiramer acetate) are unlikely to suppress your immunity against viruses and should be safe to start or continue.
MS patients on all other medications should be considered immunocompromised and therefore at greater risk of COVID19 infection. We have shown that when taking data from >28,000 MS patients who participated in clinical trials of these medications, the beneficial effects of all MS drugs decrease with the age of patients so that after age 53, these drugs do not slow progression of disability compared to sugar pill called placebo. This does not mean that current drugs should not be given to any person older than age 53. In fact, we do recommend these drugs to patients older than age 53 if they still experience MS relapses and if they make lot of new lesions on brain or spinal cord MRI. If you are older than age 53, have not had MS relapse for several years and your MRI is not showing new lesions, you may want to discuss with your private neurologist whether you should continue your MS drugs, especially during COVID19 threat. These drugs do lower your immunity and we have seen serious infections (with other pathogens than COVID19) in older people with MS. “
The letter also has a lovely section with advice for those of you gentle readers who do not have MS.
I am sharing that section as well:
“What should everybody do to protect themselves from COVID19 infection
Everybody, whether they are young or old, have MS, other disease or are completely healthy, are receiving immunosuppressive treatments or not, should immediately take precautionary measures consisting of:
- Social distancing: try to keep 6 feet away from other people. After closer social contact, wash your hands with soap and water for at least 20 seconds. The virus does not survive soap and water. You do not need to use other measures if you have soap and water available.
- Hand hygiene: wash your hands with soap and water as described above several times per day and always after close contact with other human being, or when you are outside and have touched surfaces that were touched by other people. Because you are unlikely to have soap and water when you are outside of your house, use hand sanitizers.
- Avoid touching your eyes, face, mouth.
- If you get fever, shortness of breath, dry cough, malaise – call your doctor. Do not go to medical centers. Your doctor will determine whether you need COVID19 screening test and will arrange for you to get the test. You should go to medical center/call ambulance only if you have problems with breathing (shortness of breath: breathing heavily, frequently and having bluish lips) – then you should not wait to talk to your doctor.
- It does not help you if you are doing everything right, but your family members are not: the same rules for social isolation and hand hygiene must apply to your family members and anybody who enters your house.
- Worrying will not help you. Worrying increases hormones steroids, which suppress immune system. If you allow yourself to worry, you are effectively hurting yourself. Not everything is within our control: we need to do things that are within our control and let go of the rest. Meditate, listen to birds singing outside, read books, talk to loved ones on the phone, stay positive.”
Gentle Reader, be well! Be good. But don’t be meek. Don’t wait for permission to take care of yourself!
Today I read that there is some evidence that Ocrevus was actually helpful for an MS patient in Italy who contracted Covid-19. I’m so happy to learn people on Ocrevus may not necessarily have to choose between protecting themselves from Covid-19 and protecting themselves from MS!