I last took a Kesimpta shot on January 19. It is now the beginning of March. I had this dilemma of being behind my shot date in January. After Covid and a UTI that put me in the hospital the first time, I needed to be well before I took my shot. That ended up being about 6 weeks after the last shot Kesimpta dosage instruction is every 4 weeks.
I’ve never not taken a disease modifying therapy from the moment I got MS back in 1998. I have been on many of them through the years. I still had relapses on average every 6 months or more. According to my neurologist, this is failing on a drug. It is the reason I have been on so many. In 2014, we were making the switch from Gilenya to something else. The transition took a lot longer than expected. Partially because I was looking at a clinical trial of some sort. I don’t remember all the details but I needed to be off all disease modifying therapies for 3 months. I know we decided against the clinical trial and I was going on Tysabri. However, I stopped taking Gilenya a month before we even started the paperwork transition to Tysabri. It was almost 3 months I was off all MS drugs. I had a relapse and it was the one that really disabled me.
Since 2014 I’ve continued to get worse. No matter what drug I’m on, I continue to decline every year. I’m asked all the time, “Are the MS drugs still doing anything for you?” Well I was never going to stop taking them for a period of time time to “see” one way or another. I wasn’t going to risk what mobility I do have to run a test on the MS drug question. Now I am going to have to face that question. With the pneumonia, I’m going to need to be fully healed before doing something that lowers my immune system. Not to mention I want to stop Kesimpta and switch back to Rituxan. In 6 months on Kesimpta I’ve had 4 bladder infections, Covid and a pneumonia. My neurologist feels Kesimpta and Rituxan are the same drug just dosed at different intervals. I agree but I’ve never had these type of issues on Rituxan in a 4 year period let alone 6 months. I only switched because the place I was getting Rituxan through caused me so much aggravation every time I was due for the infusion.
Well after a conversation with my neurologist, I may be finally answering the question if the drugs still help. I cannot take either Rituxan or Kesimpta until I am fully healed from the pneumonia. We discussed going back to a Betaseron for a temporary basis but even that she feels would be a waste of time. Plus it certainly wouldn’t do anything to improve my quality of life. It might even make it worse with its side effects. I am going to be off my MS drugs until I am better. My neurologist did explain that the MS drugs that deplete B and T cells don’t have the what the call the rebound effect. Meaning they don’t trigger an MS relapse like I had back in 2014. She explained it in depth but truth is my head is spinning. I just know that the pneumonia and my health takes precedence over my MS. I will have to deal with the aftermath of this all at a later date.