I’m faced with a major decision coming up soon. Do I continue taking Rituxan? Not only Rituxan but any disease modifying therapies. I’ve been plagued with infections. I do believe that all of these infections have not only been difficult for me mentally but have played a significant part in the worsening of my symptoms. It’s the age old question, is the MS medication doing anything for me? Are the side effects, lowered immunity, and damage from the intense medication worth the benefit I’m receiving from the drug? Actually, am I receiving any benefits from the drug? That’s the real question.
In 2014, I had my last relapse. I was thinking of joining a ms drug trial. I needed to be off all disease modifying therapies for 3 months. I stopped taking Gilenya. I was fast to decide against the clinical trial but it took a bit to get me approved and started on Tysabri. In all I was off of MS drugs for 3 months anyway. I had a relapse in the beginning of that 3rd month. It was this relapse that really started my disability. I was unable to work by 2016. It is this memory that me and my family keep playing back in our minds. If I stop taking the drug am I risking another relapse? The thing is when I was taking Gilenya, I was still having relapses. That is why we were looking for something new. I would “bleed through” all my disease modifying therapies, including Tysabri. I would average two relapses a year regardless of what medication I was taking. Eventually, I stopped having relapses but just got worse. I know I was only on Tysabri for about a year. 2015 was a very difficult year for me. I needed to finish that last year of work but I had so many bad days. There were so many tears. I was changed to Rituxan around then. I don’t remember any actual relapses but it was a steady decline each year since then. Ocrevus and Kesimpta were used during the years but I didn’t tolerate them as well so I stuck with Rituxan. Here we are 7 years later, I am so much worse than I was back then, so does it matter about taking Rituxan?
My next dose is in early November. My specialist is ok with me stopping. She feels, that we can always start again. Problem with that is if I could still have relapses how much worse will I be? I won’t recover. I learned that after the hospital. My regular neurologist I’ve been with for 25 years goes back-and-forth like the family. There is that little seed of out in the back of the Betty mind. There is that what if? I have an appointment next Tuesday with another urologist period after 25 years with my neurologist, he’s going to retire I’m going to have to find a new one. I’m going to see where he weigh in never meeting me before. I would love to know my reader thoughts.