Hi, I was wondering if any of you lovely people with SPMS have heard about this drug that is in the process of trials. I have googled it and only certain people can use it. Any feed back would be appreciated. Janet x
Hi Janet,
I heard about simvastatin last year, wasn’t it initially used to reduce cholesterol ?
Read that there’d been a small trial over 3 years ago, to slow/halt progression of SPMS, but still haven’t seen any results from that trial.
The old saying “…no news is good news” may be laughable in this instance !!!
Dom
(…who aims to live another 125 years to see if any of the current research is actually going to result in something worthwhile !!)
Yes, Simvastatin is used in small doses as an anti-cholesterol drug (I did not take it well, and was changed to Atorvastatin - the dreaded Lipitor).
The normal dose of Simvastatin is 10-20 mg, daily. The trial as an anti-MS drug was in the order of 80 mg daily.
Don’t hold your breath!
Geoff
Hi Dom, Yes I also read it was to reduce cholesterol but it said anyone over a certain age and women couldn’t use it. Grrr, so what’s the point?? Thanks for replying. Janet x
Thanks Geoff, Just hoping, but I’ll keep on breathing instead! Janet x
Hi Janet,
Yes, as Dr. Geoff says - don’t hold your breath. This was a topic of discussion at my Tysabri infusion last week. It’s completed it’s phase 2 trials, and they were looking to go on to do a larger phase 3 trial (Imperial). However, there’s no funding available, so it’s not going to happen - so that’s the end of that! Money makes the world go round. Anyway, you can get access to a summary on this site
It was posted up quite a while ago now so you’ll have to go hunting, but it is there. And it should also take you to the original article as well.
Take care,
Forest
The results from the stage 2 trial of Simvastatin (80mg a day) were encouraging. My neuro agreed to put me on Simvastatin in the hopes that it will slow down my progression. My GP gave me a liver function test before I started on the drug and I will have one every three months from now on. I started on 40mg a day of Simvastatin about five weeks ago and I have been taking the higher dose for two weeks now.
Anyway, my point is, you can just ask your neuro to prescribe this drug and see how you go with it. There was a short piece in the last edition of MS Matters about this which I took to my neuro when I was asking him to put me on it. I think his view was ‘this is a widely prescribed drug, might do some good, probably won’t do any harm (and we can check it isn’t doing harm by keeping an eye on symptoms and doing liver function tests) so she might as well have it’.
Sewingchick,
Most importanrly, is Simvastatin doing you any good, and how long have you been using it now (i.e is it still too soon to tell if progress is being slowed down/stopped) ?
Look forward to you kind advice,
Dom
Sewingchick,
Most importanrly, is Simvastatin doing you any good, and how long have you been using it now (i.e is it still too soon to tell if progress is being slowed down/stopped) ?
Look forward to your kind advice,
Dom
Thanks for all your replies, much appreciated. Janet x
Sorry to take so long to reply to the question about whether I think it’s doing me any good - been busy on not been on here. The answer is - I don’t know.
My bladder control has improved recently, which is absolutely brilliant for me. My walking is worse however - my physio says my hamstrings are weaker but some of my other muscles are stronger so I think that’s an MS thing rather than caused by the Simvastatin (which can have muscle weakness as a side effect but I think it would affect all my muscles).
But I don’t even know whether I can expect to see any improvements from taking the Simvastatin. It’s advertised as possibly slowing down progression. As an over-optimistic person, I wonder if slowing down progression gives your body more chance to do myelin repair and you might see improvement … does this sound plausible?