I had my nine month appointment with my neurologist, Dr. Oh at VCU. We discussed my past two hospitalizations. They were both for infections that exacerbated my MS. It is called a “pseudo episode.” I learned, (which I feel I should have known), that the longer you’re on Ocrevus, the more susceptible you are to getting infections. Ocrevus gets rid of your B cells, which protect you from infection. So now the question is, if I want to continue taking Ocrevus or schedule it every nine months instead of twice a year? My next infusion is scheduled for September and he wants to check back with me in August.. If I stop it would take at least a year to get the B cells back. Right now I’m thinking I want to stop. When we talk in August I will tell him.

At my age, I really want to stop taking so many drugs, and the only way to do that is to see how it affects the MS. If it gets worse, then I will go back to taking it. I cut back the Baclofen, because I take 100 mg a day, and was told that’s a lot. I only cut out one pill, (20 mg), but its a start.

We discussed if there was any new drugs available for MS. He told me there were three companies working on a new treatment called BTK. It is a new way to approach the treatment of MS. The trials were successful and they thought it would be approved, but unfortunately the FDA did not approve. It caused liver problems, which a lot of the existing drugs already do. He said one of the other companies are going for approval, but it might take a year.