Hi everyone, I’d be really interested in hearing about anyone’s experiences of this drug. My MS nurse has just sent me some information about siponimod. I’ve had MS since 2005 and quickly moved from RRMS to SPMS so I only had a short period on DMDs (Avonex). I was told to “just get on with my life” by my neurologist! So I got my head around the idea of not having any treatments available to me and I’ve tried to stay as active as possible which has hopefully helped. Now that this drug is available to people like me with SPMS I’m completely put off by the side effects. They are no small thing to me… if anyone has anything positive to say about the drug then it would be great to hear it but so far I’ve only seen negative stuff! TIA x
I started with Siponomod in the beginning of June. Having has RRMS for 12 years, but then bad back and balance problems for the last 2 years, I was diagnosed with SPMS in Jan this year.
I felt like I was beginning to slur, and that has improved with the Siponimod. I have, however, had problems with dizziness and high blood pressure which I am sure is due to the medication. I am now taking blood pressure medication which has addressed that and I am not dizzy now.
One thing I do seem to have is feeling wobbly in my legs, although I can still walk, but trying to do exercises to improve this.
I am not sure what is due to the medication and what was due to my condition worsening before I started, but my speech is improved. Mentally I am as before also (at least I think so!).
A bit difficult to say what is definitely a side effect vs a worsening position.
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I was on Siponimod - that was my 1st treatment. My BP was off to begin with but soon settled down. I felt fine with it - he only issue I had and the reson I had to come off it was my Liver function tests were high, but the other tests on my liver were fine. The liver consultant woudnt get back to my neurologist so i had to come off it…I would give it a go
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Thank you for your reply. I feel especially nervous about trying it after kind of managing without any treatments… although I’m probably jinxing it now!
I have SPMS and have been on Siponimod since January
I haven’t noticed any progressive since
My blood pressure has also been high but I take various beetroot supplements and medication to bring it down
I would recommend taking Siponimod if you are given the chance
It will probably halt further progression of your ms