Hi everyone, I’m new on here and was just wondering if anyone with secondary progressives MS had been involved in the Simvastin trials? I’ve been asked if I’m interested in getting involved in the next stage but would really appreciate anyone else’s thoughts…
thank you
Hi I have just finished a 2 year trial for SPMS & waiting to go on simvastin trial. I will try owt. Paul
Hi Juliette
I wasn’t on an actual trial, but on the advice of my neurologist, started taking Simvastatin to slow the brain shrinkage. After taking it for a month, I started feeling like my legs had suddenly become much weaker. I even thought maybe it was a relapse, even though I’ve been classed as SP for a couple of years now. Then I checked the side effects of Simvastatin, one of which is weakness. So I stopped taking it. It’s been about two months since I stopped and my legs are now pretty much back to where they were before.
I doubt that everyone gets this kind of side effect, it’s really a case of try it and see what it does. I don’t think I’d have been happy to be on a double blind trial though, the potential side effects are a bit too difficult to isolate, so it would be very hard to tell if you were experiencing a side effect from taking the real drug, or just an MS symptom. And because it’s not a drug that would show any actual benefits while you’re on it, you’d be hard pressed to know if it was doing any good.
Sue
I’ve been taking Atorvastatin for the last two years (GP said it was more effective than Simvastatin) I can’t honestly say I feel any different now.
I’ve thought from the get go I was being experimented on as I was put on them just weeks after the article appeared in the lancet, and they were covering themselves after years of my gps refusal to suggest any symptoms could have been caused by MS, she still doesn’t want me under a neurologist! I’ve always known that the medical profession back each other up.
Hi Sue, this is what’s worrying me. I’ve been diagnosed as SPMS for about 6 years now and I don’t want to jeopardise the few glimpses of feeling well that I get these days because of any side effects. I’d heard Simvastin can cause tiredness and muscle spasms which I have plenty of already! However they told me it may reduce brain shrinkage long term… something I hadn’t even heard of before! Anyway it feels like a huge decision and thanks for your reply xx
If I were you, I’d try to get the Simvastatin prescribed rather than as part of a trial. That way you know you’re getting the drug. My leg weakness came about fairly quickly, so I could stop the drug as soon as I realised it could be a side effect.
I know they have to do double blind trials on someone, I’m just glad I wasn’t one of those people. Maybe a tad selfish, but my legs are bad enough already to risk any more weakness.
Sue
I’ve got PPMS and I’ve been on 80mg of Simvastatin for about 3 years now. It was recommended by my Neuro “for future benefit”. I was very nervous when I started taking it and fully expected nightmare side effects but I don’t seem to have had any. Everyone seems to react differently to Statins.
I have PPMS and have been on 80mg of Simvastatin for 6 months suggested by my Consultant to see how it goes! Didn’t fancy ‘brain atrophy’ or shrinkage. I haven’t noticed any untoward symptoms and happily take any future benefit living in hope, Take care guys, be safe M x
I’ve been taking 80mg a day since May 2014. Don’t think it’s done me any harm, hope it’s done me some good.