Going without treatment?
I’m wondering if anyone decides to go without treatment. Maybe it depends on how aggressive an individuals MS is. I have RRMS and have been on Kesimpta since October. I don’t have side effects but getting other sicknesses like colds is hell. It knocks me out. And I’m getting more issues from other other sicknesses. Currently I have pleurisy from an ongoing cough from a cold/flu I had a month ago. That has never happened to me before. I’m starting to consider if immunosuppressants are worth being horrifically sick multiple times a year versus getting an ms flare every few years without the meds. I don’t know actually how often it would be obviously but I just am not sure. Anyone here going without immunosuppressant treatment and how is that going for you?
I have asked myself if i do really need these drugs. After ten years of no relapses. However I then tried without. It didn't go well. I think stress during covid triggered another mini relapse. I came of of tysabri after ten years due to testiing positive pml a few year earlier and my risk climbing. Made it two years fine. I am now on kesimpta. I think it may be possible for some but not all of us. Getting rid of things that cause excess inflammation and getting as fit as you can is a start but still not a guarantee you can come off the treatment drugs. It is a risky decision and i think you should discuss this with your ms team first.
Personally, I don't think it's worth the risk for what you could lose during a flare. That's the real pro and con you have to weigh. All it takes is the right lesion in the right place. But that's just my opinion. I know it sucks regardless. I may have to miss a few of my doses of Kesimpta due to moving and insurance change and it terrifies me.