Forum

Siponimod

Hi,

Any further news or experiences with Siponimod for SPMS?

I have an appointment for March next year to discuss starting this. It’s a long time but I will let people know the outcome.

Jan x

This must be the drug for SPMS hope so theres nothing that I know of.

I’m on the Simvastatin trial study for SPMS, its a 3 year double blinded trial.

My consultant recently said that Siponimod MIGHT get a release next year, but its not definite ?

He also said that anyone on the Simvastatin study allows them direct selection for Siponimod, if it is released and if they are suitable.

That was one of the reasons why I put myself forward for the Simvastatin trial study.

I believe there are still places open for the Simvastatin trial ?

Might be worth looking into if anyone wants to be at the front of the queue and considered for any other possible drug releases !

Hi, J et al I have been taking Simvastatin for three or so years now, so will consult with Consultant as to whether I’d be suitable for Siponimod. IF it’s prescribed ? Thanks for your info.

Hi Jactac and all Siponimod has already been approved in the USA and it may be approved in England by end of the year, I read. You say you have been on a trial, I tried to get on any of these tails and after going through page after page of questions I was told I was too old at 68. I am due to see my neuro in December for my annual visit and I intend asking may I go on it if it is approved and if it is not can I go to USA and buy it privately because I am desperate to improve my walking just a bit, can walk 20 metres with rollator need to walk 40 metres without stopping and get back. I also am going to ask my neuro may I see her or another neuro on a more regular basis privately, quite happy to pay because basically the NHS is just an overstretched monster. Bertie

Search Simvastatin trial, I’m sure you will find a link to join the study.

In fact I think theres a link on this site somewhere ?

I don’t know anything about siphonimod - is it related to fingolimod?!

AV/Nia

From MS Trust. https://www.mstrust.org.uk/a-z/siponimod

Thanks for the link, Whammel, a very informative read. That’s me out of that treatment though - I have MS related epilepsy (among other things).

I hope it works well for everyone who opts to take it.

Av/Nia