Morning all !
Has anyone tried / is anyone trying the medication Simvastatin, which is supposed to potentially slow down the rate of progress in SPMS ??
My neuro has never even mentioned this drug and the brief online research I’ve done is only based on a very small trial (140 people) conducted a couple of years ago - so as yet no-one seems to be prepared to say definitively whether this could help or not
Any advice / experience would be much appreciated !
Dom
I’ve never hears of it for MS…MrH is on it but for reducing cholesterol due to a family history of heart disease.
Yep Dom -it was mentioned at an MS conference, I was at, but still in infancy stages to be honest, much like, alot of other stuff…
It seems the phase II study has been completed and the findings are still being reviewed.
Oh that`s news to me too!
I was on it for cholesterol for a few news.
if it does reduce the rate of progression in SPMS, it`s gotta be good .
pollx
It’s primary use has usually been to reduce cholesterol for sure, but I read that it is subsequently being investigated for use in SPMS.
As whammel says, the phase II clinical trial has been completed, but I had hoped that the findings would have been reviewed and published by now?! (Maybe I’m just being impatient, but I do hate sitting around while we wait for over 2 years for study-findings to be finalized !!)
Can’t help thinking maybe that’s 2 years of deterioration that could have been avoided for many folks?
(I certainly wish I could still physically ‘perform’ the way I did 2 years ago …and that wasn’t anything to write home about, but considerably better than things are now !!)
So if MS is listening, could you just wait outside until I call you in !!
Thanks for the input, Folks !!
Dom
This one might be worth keeping an eye on, but sadly nothing instant.
http://www.mstrust.org.uk/research/drugsindevelopment/siponimod.jsp
Thank you loads, whammel,
I’ll be very interested to see how this shapes up in due course ?!! (…another med that my neuro never even mentioned and now it’s way too late to even volunteer for the trial)
Take care, my friend!!
Dom
I was on Simvastatin as I am also Type 2 diabetic and this was prescribed to me as the threshold of cholesterol tablets is reduced if you are diabetic. I was on this for a few months before I started noticing leg aches/pains. It was unclear at the time if these leg pains were due to statins or if they could be related to MS but once these tablets were stopped, so did the leg pains! I believe this is one of the more common symptons with statins and simvastatin is supposedly one of the cheapest of the statins so is one of the first you get started on (according to my doctor).
ive been put on it by my neuro can not say if its helping but ??.. lol
i dont have high colestrol (3.5 from what im told) but he told me theres good signs that it helps 
I take simvastatin for high cholesterol, but not the 80mg dose they used in the trial. I have SPMS but sadly my lovely MS symptoms have got worse. But I’ve had no nasty side effects and my cholesterol levels are better. I could cope with a higher dose if it might affect my MS
A link to a news story from MSTrust about simvastatin.
Hi Dom, My neuro recently prescribed this for me too! I am PPMS but had a couple of ‘episodes’ two years ago that made him wonder whether I was SPMS. Anyway, I started this and am slowly building up to the 80mg. I keep having to interrupt my progress though owing to a couple of UTIs which I have had to take Ciprofloxacin for and this is contra-indicated with Simvastatin. So far, so good! I was taking it before bed but when I got to 40mg, I started to have trouble sleeping. Therefore, the GP recommended I take it in the morning. Since then, I’ve slept much better! Hope it helps us both! Teresa xx
Thank you so much for your input, Teresa !
Do you feel that this drug is helping at all ?
Dom
Tbh - no difference at all but I guess you never know that one day you might wake up and feel more human! Lol! Teresa xx
sorry but what is SPMS
I met a bloke at the gym today who claims he still has the option of joining the siponimod trial, so might be worth asking if you fancy it.
Thanks Whammel,
Yep - entirely my mistake for misreading the trial info first time round. I would have been keen on volunteering for the trial but the nearest location to me is London and public transport is one of the things I have major difficulty with these days.
I’m therefore volunteering for a trial on Ibudilast, Riluzole & Amiloride as - amongst other things - my local Neuro centre (about 1 and a half miles away from home) is one of the trial locations.
Dom
I was on Simvastatin for a while before I was DX and I had smilar issues when I developed two frozen shoulders.
My Statins were stopped straight away but, unfortunately, my symptoms didn’t stop. I could not lift my arms any height or reach behind me (eg to do up my bra of do up a zip).
I STILL CAN’T
No one has suggested that there was a link between the Statins and my MS (which was probably bubbling away under the surface at the time)
Annoyingly I wasn’t put on the Statins because of high cholesterol (mine was and still is low despite being a Type 2 diabetic (now in remission)) I was put on because there was a target set for GPs to have a proportion of all their patients on them.