Siponimod was approved for use in October 2020 and I wonder how those taking it have got on.
In particular I would be interested to learn of the different ways Siponimod has affected you for good or bad.
And how your MS has responded.
Many thanks
Hi, I have been on siponimod now for just over 12 months, and during that time I’ve had no relapses, but my mobility has got worse.
My blood pressure varied at the beginning but soon settled and I was very loose for a while but again settled. I havent had any problems that i’ve noticed, but I do have a problem with my liver function test.
Before I started my liver test was 23 ( should be under 55) then up to 67, then over 120 and its been high for over 9 months - my consultant is talking about changing me to injections, which are not as strong, plus they are injections! dont like that idea!!!
Anyway - a friend had a fatty liver and was told to cut down on dairy products, so I tried it. I now drink coffee black, and my liver test has gone down to 79 in about a month. My consultant still thinks its better to go for injections, but I would like to wait to see if it comes down any more -wait and see.
If you do go on siponimod and your liver test goes up, try cutting down on dairy -it may be worth a try, no one else told me that
Hi Act1,
Thank you for responding so fully to my post asking for people to share their Siponimod experiences.
It sounds like you’ve taken a very hands on approach to your treatment.
Well done you.
Thank you also for the tip about the dairy products. I’ll keep it in mind.
I’m pleased to read that you’ve had no relapses.
I note your comment about your mobility had become worse.
How did this manifest itself?
Did you have any issues around tiredness or lack of drive? I see that these could be one of side-effects.
Once again thank you for sharing your experiences.
Hi, as i understand it, Siponimod will help to prevent relapses, but not improve symptoms.
I have foot drop and my knee gives out so i end up with pain in the groin and back problems. The time i can spend on my feet has reduced greatly, and i cant walk far - always have a brace and if i go outside i have a FES device, but i may have been worse without siponimod - who knows
I do suffer with tiredness but maybe ms or menopause and not tablets - again im not sure
Hi Act1,
Once again thank you for sharing your experiences.
Very informative and helpful.
Hello Ulsinus and ACT1 - I have now found this thread and read it. ACT1’s comments are helpful.
I wonder if anyone else will respond … hoping so
Daffodil
Hi
I have SPMS. I started siponimod 4 months ago. Im still a bit unsure about taking it as far as symptoms are concerned. I suffer from incredible tiredness, and my mobility has worsened.
I have also developed soreness and aching in my breasts, armpits and chest. Is it siponimod, or the MS hug? Not sure. I’m seeing my MS nurse today.
Hi Isa50,
Here’s the experience of a male.
At the six month mark I stopped Siponimod.
MS spasticity
Rather than stabilising my MS my mobility has been negatively impacted. The extent of stiffness I experience in my left leg has progressively increased. At times this makes walking very difficult. Taking Baclofen during the day in an effort to mitigate this has no effect.
Tiredness and lethargy
While I am use the feelings of tiredness associated with my MS something I have not experienced before to any great extent is that of lethargy. I find this new symptom somewhat debilitating.
I stopped Sponimod and things improved.
That’s my experience but discuss with your medical team.
Best wishes
Ulsinus
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