How Has COVID-19 Affected Your MS Life?
I canceled my April blood draw. The protocol for Lemtrada (alemtuzumab) requires lab work each month because the treatment can have serious side effects. But I spoke with my neurologist and we decided that I could skip it. Blame it on COVID-19.
My legs are stiffer than they were two months ago. My walking is slower. I’ve postponed my semiannual visit with my neurologist. Blame it on COVID-19.
But I’m lucky. COVID-19 is having more of an impact on the lives of others with MS, requiring them to make tougher decisions. Mark is an example. He’s in the middle of Ocrevus (ocrelizumab) treatments, which compromise some of the immune system. In a comment to an earlier column of mine, he wrote:
“My next Ocrevus infusion is due in early June, so I’m very happy to have found this discussion–feeling unsure as best way to proceed. I’ve heard that while we Ocrevus people may have increased susceptibility to infection, the immuno-suppressing actually could be beneficial if it ends up warding off the dreaded ‘cytokine storm’ that can lead to complications/death. Interesting mixed bag!”
Another Ocrevus patient described her anxiety on a Facebook group I monitor:
“Currently getting my Ocrevus infusion. It was an extremely difficult decision for me to make. I felt like I had to choose between my MS getting worse or an increased chance of catching & dying from CoVid due to immunosuppression.”
And it’s more than just a question of whether a specific MS disease-modifying treatment might increase or decrease COVID-19’s impact. People receiving infusions need to decide whether spending time at an infusion center or a hospital is risky for them.
In the U.K., MS News Today columnist Jessie Ace must travel to a hospital for her blood tests and to pick up her medication. That concerns her. Some may need to use mass transit to get to their neurologist or MS treatment location, another potential risk. All this can mean anxiety with a capital “A.”
What should you do?
What to do is a question for you to discuss with your neurologist, but professor Gavin Giovannoni at the BARTS MS Center in London is another great information source. “Professor G,” as he is known, has had his finger on the pulse of MS and COVID-19 for many weeks. His MS Selfie microsite is an excellent place to ask questions and read case studies about living with MS in a COVID-19 world.
How has COVID-19 affected your MS life?
I’m lucky. My MS symptoms have been relatively stable through all of this. My Lemtrada infusions ended two years ago, and the meds that I use for my symptoms are all delivered by mail. Food also can be delivered, and my scooter and I go outside a few times a day.
As for my lab work next month, I’m going to have it done. I’ll mask up and make sure the home care lab tech does the same. The benefit of keeping track of Lemtrada’s impact on my body outweighs the risk of COVID-19.
How has COVID-19 affected your MS life? Please share in the comments below. You’re also invited to follow my personal blog at www.themswire.com.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Ruth Hoham
I was disappointed that the MS Gym Summit was cancelled - I was hoping to “take the plunge” and prove to myself that I could accomplish the trip. Oh well, maybe next year - have a credit at the airline carrier!
Ed Tobias
Hi Ruth,
No doubt, that's disappointing. If the MS Gym has helped you to improve that's something to celebrate even without the trip. And, I'll bet you can find something else you can do to prove what you can now accomplish. If you do, please let me know.
Ed
Bonnie Fitts
I was suppose to have my Ocrevus infusion in June but have moved to a different state and will not have an appointment with new neurologist until July I’m concerned about my MS symptoms because of interruptions of infusion I have been on drug since came out I have been stable at present however I have not had any significant improvements in my
walking since I have been taking medication
Ed Tobias
Thanks for your comment, Bonnie.
Remember, Ocrevus is only designed to slow or halt your disease progression. Though many people have reported their symptoms have improved that's just icing on the cake. I hope yours do improve but be pleased if the only benefit is that your progression has ended.
Ed
Frances Worness
I too am on Ocrevus and postponed my infusion by a month due to Covid 19. I have been on Ocrevus since it came out, and only recently have noticed several improvements. One is my body's response to traveling by car. I went from Kentucky to Illinois for this past Thanksgiving and the travel was not nearly as bad as I have experienced in the past. I used to have severe issues with fatigue and muscle spasms when traveling by car over long distances, but this time was different. I did not experience either of these symptoms on this trip (which involved sitting in the back row of seats in a pick-up truck). While a little stiff, I did not have the severe fatigue or spasms that I was used to having after sitting still in one position for a long period of time. This improvement started showing up in a number of other situations - so I am truly grateful for my Ocrevus infusions.
Barb
How has that darn covid 19 virus done to me and my Multiples Sclerosis. I been dealing with Trigeminal Neuralgia really bad . I end up going to to hospitals different hospitals . For help cause the pain was so horrible that I wanted to end it . I understand the hospitals had the virus to attend too . But I wanted CV to say ____ that virus I need help and they just gave a little shot and throw me out . Not really caring. I hope I will be able to get the gamma knife done . Which I had done in 2013 and it was wonderful for me . I understand the virus is a killer but so is my pain . I had to give up aa a lot with the M.S. but I'm giving up a lot cause of the pain. If medical personnel is scared of the virus they should get up working in the medical field . Cause are troop cant quit cause them being thrown in to war.
Bill
I had to skip botox treatment for both legs for the first time in years which really has helped with spasticity, constant pain and difficulty walking. I would rather deal with aggressive PPMS now than potentially catch the virus.