Hi y’all, is anybody out there on Simvastatin (which neuro says studies seem to suggest might halt progress - you probably have all heard about this before)? I am about to start it toight. I am hoing that it doesn’t zonk me out too much as I know that’s a potential side effect … Debs x

Hi Debs, I take Atorvastatin. I did originally try Simvastatin but made pain in legs worse. My neuro also suggested it to halt or slow down progression, although I’ve read that the trials only showed it worked for SPMS. But worth a try! Let us know how you get on. Pat xx

Hi Debs, I take Simverstatin but only 40 mg for cholesterol. I think I am correct in saying the dosage for delaying progression is 80mg. I don’t get any side effects from 40 mg and would love to try 80mg to slow my progression…cant say that 40mg has slowed my progression. Well, of course I suppose I can’t really know that for sure but goodness know what I would be like if it has!! Nina x

My mum and dad saved me a newspaper article about Statins slowing ms progression in the brain, but when I spoke to my gp he said it probably wouldn’t suit me as it causes muscle spasms which I’m already taking pain killers to ease but my liver functions are raised due to my meds so it’d just put more stress on it. My dad was on them for his cholesterol but stopped recently due to severe muscular pain which eased within days of him stopping.

At least if my mind goes first it won’t bother me how much of my body is broken! Take care.

Cath xx

Hi Debs, Keep us posted on how you are getting on. I would be interested in trying it myself but so far nobody has offered it to me. Good luck with it. Mags xx

I had muscle pain in legs on only 25 mg. Pat xx

I have muscle pain too but had it long long before I started Simvastatin so not going to stop…would be interesting to stop for a few days though and see what happens…will keep you posted. My father in law and sister in law stopped taking them for that reason though so it must be quite a common side effect. Nina x

Hi Debs I’ve been on Simvastatin for 10 years now. Never bothered me in the slightest. I know some people have trouble with it. I’d be delighted if the study finds it useful for MS. I take it because I had AF ten years ago, and the doc wanted to protect my heart as much as possible, and my cholesterol was slightly high. I’ve been on aspirin for the same reason, and just had a letter from the doc that we need to review that in the light of the recent announcement about that. Kev

OK guys, some interesting and encouraging messages there. Yep, I shall simply have to ‘suck it and see’ as they say. I took the first one last night (half of 80mg, just to build up to the full whack in a week or so). I might be wrong, but I don’t think anyone should have a problem getting it from GP as it’s a drug that’s been out for about 20 years I think (for cholesterol) and is not going to do any harm apart from, possibly, unwanted side effects. My neuro was the one to recommend it and wrote to my GP. You’re right Pat about the trials being for SPMS - PPMS gets left out yet again, but neuro thought it might also work for PPMS. Also Pat, I shall bear Atorvastatin in mind - was that prescribed for the same reason, ie possibly halting progress? I shall be interested in the further trials and in meantime keep my fingers crossed re side effects - no more fatigue please! Debs x

Hi Debs, no, statins were prescribed to me for high cholesteral. I’m only on 10mg a day. But my neuro’s registrar also thought Simvastatin might slow progression in PPMS, but I had already had muscle pain with it. Best of luck with it. Be interesting to hear how you get on. Pat xx

Good luck Debs, Let us all know how you get on. I have read a couple of different articles about it, one said SPMS but the other said progressive. I really can’t understand why it wouldn’t work for both. All extremities crossed you don’t get any side effects. Nina x

I can’t see why it couldn’t work for both (SP and PP)… esp as some believe that PPMSers had very mild RRMS & only realised something was wrong when their MS became progressive and they seek medical help. I think that was the case for me as can trace symptoms back to my 20’s, but they would come and go and I was dx with everything from anxiety to hypachondria! (sorry I know that’s spelt wrong!!). Was dx ppms at 54… Hey ho… Pat xx

I was on the Sivastatin trial, on the active drug, which was given at 80mg. It’s a shame a lower dose wasn’t trialled, as well. I’m interested that some of you have been prescribed that dose by your neuros/GPs, because neither my neuro or GP would prescribe at that level.

The heartening finding (of the research) was that it reduced the rate of brain atrophy - which might act to slow progression. More reserch is needed, as always.