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Support, help, advice & information for Multiple Sclerosis. Ask questions & share experiences with people affected by MS.





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Siponimod Clinical Trial

Posted by Rama , 11 October 2014 · 682 views

Hi All,

Well I have enrolled for a clinical trial, efficacy of Siponimod for secondary progressive MS -

http://clinicaltrials.gov/show/NCT01665144

I hope that link works as it saves me having to describe the trial to you all. I have been on the drug, or placebo, for about three weeks. Nothing to report yet!! Except to say that I feel so well looked after.

For the past few years I have seen my neurologist once a year and I feel he was just going through the motions with me. In fact he didn't even show up for my last appointment. The doctor who was there in his place was unable to answer any of my questions and she assured me she would discuss them all with my neurologist and he would either phone me, or write to me addressing all my concerns. I heard nothing.

Since starting the trial I have been seen by a neurologist three times, had an MRI scan, eye tests, several ECGs, cognitive tests, pulmonary function tests, EDSS assessment - the list goes on.

I know I might be on placebo, but it feels nice to be having so much attention and being so well looked after. Especially after my MS nurse telling me that my neurologist might want to "sign me off" once I was diagnosed as secondary progressive.

I wish I could say I was feeling much better now that I am on the trial but unfortunately two weeks after starting the trial I developed a UTI which floored me - walking was such a struggle and stairs were out of the question. Just finished a course of antibiotics so hopefully I'll start to perk up a bit now.

Here's hoping that Siponimod does actually prove to be effective at slowing the progression of MS and fingers crossed I'm not on placebo. I want to put a smiley face in here - but I am typing this on my iPad and it won't let me.

Gill xx



Hi Gill,
Interesting, Ive been on the Tysabri SPMS trial for the last 18 mouths.    I've also read that simply being on a trail is benificial despite not knowing if you are on the real thing or not.  Anyway good luck with it all, every little helps.

Nick
I asked about going on trial but was told all places have been filled. Oh well.
Hi Rosie,

What about the MS SMART trial? You could enquire about going on that!

http://www.ms-smart.org

Gill x
Hello Gill,
Good luck with this trial. It's reassuring to know that you are being taken care of whilst on this trial...although I think most of us would feel that we should all be looked after like this, trial or not ! I guess the NHS just can't afford to. So it's down to the drugs company to pick up the cost. Which, in a way, is a good thing as the NHS couldn't afford the trials anyway!

Let's hope the trials bring results eh?

UTI's are awful, I too have only just recovered from one. The anitibiotics worked quickly for me so fingers crossed.

Scully
x
Hello Gill, How is trial going?

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