I have an appointment tomorrow morning in NYC with my MS specialist. I’m coming off a 3 day round of steroids to see if it was at all possible I could be having some type of relapse. I personally didn’t believe that’s what was happening, however I believe steroids can you give me a little bump up in the energy. My thought going into tomorrow is if I’m still deteriorating so much, why am I taking such a heavy duty drug? Ocrevus comes with many side effects, https://www.ocrevus.com/patient/safety.html?c=ocr-1632bb43840&gclid=EAIaIQobChMIuLuOqPzO3gIVw5-zCh3uBA5JEAAYASAAEgKy7vD_BwE&gclsrc=aw.ds is it really helping me? Do the pros out weigh the cons anymore?
There is another drug on the horizon that is geared to secondary multiple sclerosis, siponimod. This drug, expected around March 2019, will be the first drug for those with the secondary form of the disease. https://www.pharma.us.novartis.com/news/media-releases/novartis-announces-fda-filing-acceptance-siponimod-baf312-first-and-only-oral. This drugs release date coincides with the next date for my Ocrevus infusion.
Then I know my doctor has mentioned Ibudilast in the past. https://www.pharma.us.novartis.com/news/media-releases/novartis-announces-fda-filing-acceptance-siponimod-baf312-first-and-only-oral. This again is another drug that is being looked at for secondary progressive MS. Both Siponimod and Ibudilast don’t come with the serious side effects that Ocrevus has.
I personally feel since the drug isn’t holding me, why take the risk of other complications. I think we tried Ocrevus for a year and a half, it’s sister Rituxan for a year and a half and I’m worse. Yes, I could be even worse if I didn’t take them, I get that. I’m not saying take nothing. I just feel like I should go back to something like Gilyenia who side effect risks were minimally less. Tomorrow this will be my discussion point. Hopefully it will have a positive outcome.
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