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.”
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