Hello, I started on Siponomid this morning. Am somewhat nervous and hope I have done the right thing but felt I should do whatever I could to slow the progression of my MS. There is a very long list of possible side effects, some are really scary, but I am hoping for the best.
My feeling is that it wouldn’t have been approved for use within the NHS unless the research showed positive results for most people.
You start off on a very low dose and gradually build the dosage up over the course of a week.
so I am crossing my fingers and I will keep you posted.
Hi, Ive been on siponimod now for 18 months and I feel fine. My blood pressure dropped to begin with, but soon settled. The only problem I have now is my liver test (ALT levels) which they always test for and not everyone has problems, but the consultant is thinking to take me off the tablets - I would like to stay on them if possible, but obviously dont want to damage my liver. If it wasnt for that I would deffinetly stay on them. Hope they work for you x
Thank you ACT1. I am up to day 4 of the titration pack and I don’t think my blood pressure has been affected - as yet. No one is monitoring it though. I am to have my eyes tested in a few months but not sure when my ALT levels are to be tested. I expect I will get a referral letter/appointment letter in due course and will check my paperwork once I am on the full dose to see what happens next.
I hope you and your consultant can come to agreement and understanding about your own continued treatment.
Hi I’ve been on Siponimod for a couple of months. So far no side effects apsrt from very low white blood cells, which is expected. Had covid a couple of weeks ago, very mild but 3 days of pain and extreme weakness.