Hello everyone, does any one have any experience of taking Siponimod. My neurologist has suggested and offered it but can’t find any info of people’s experiences taking it. As usual the list of possible side effects is scary and I’ve always shyed away from meds. I’ve had RRMS for 15 years and SPMS for at least 4 years. Currently I can only stand for very short periods of time and I’m coping but don’t want to do anything make my general wellbeing worse. Any info would be useful. Thanks everybody and best wishes x
Hey
I don’t have personal experience with Siponimod, but I’ve come across a few discussions from people in similar RRMS/SPMS situations, so I can share what I’ve seen mentioned.
A lot of people say the big thing with Siponimod is the monitoring at the start (especially heart rate checks for the first dose) and then regular blood work/eye checks over time. In terms of side effects, the ones that come up most often are things like fatigue, headaches, and sometimes a bit more vulnerability to infections. Some also mention liver enzyme monitoring and occasional vision-related checks (because of a rare risk of macular issues).
That said, there are also quite a few people who say they tolerate it fairly well once they get past the initial adjustment period, and that it feels manageable compared to some other DMTs—but it really seems very individual.
Given you’ve been dealing with MS for a long time, I totally get why the list of possible side effects feels daunting. It might be worth writing down your biggest worries and going through them point-by-point with your neurologist so you can weigh up risk vs benefit in a clearer way.
I also found a general discussion space that might help you read a range of experiences here: now
Wishing you all the best with whatever you decide, and hope you get some more first-hand replies here too
2 Likes
Hi @the.happy.gardener I can only tell you about my near experience of it but I hope it is useful. After years and years of no relapses an MRI in Jan showed a new lesion. My neurologist suggested Siponimod and after reading about it I decided to go for it.
You are right , the list of side effects is scary but the frequency of them is pretty low , you get checked and monitored and any adverse effects can be dealt with.
I was sent off for a range of blood tests, BP and ECG ( also genetic test to see if I had a gene that would affect my ability to metabolise the drug).
The outcome of the various tests were good except my ECG showed something that didn’t require attention but could be a risk if I was to go on Siponimod ( still not quite sure what the ECG showed). So the eventual outcome is ’ no Siponimod for me’. That was a bit of a disappointment. The drug doesn’t make a ‘night and day’ type difference to secondary progression and increasing disability but even a small slowing down of disability would be nice
1 Like