Simvastatin?

Everyday living
1

Anyone on Simvastatin?

on my last MRI I was shocked by the atrophy around and inside the brain.

I note Dr Chataway’s taking it to third trial.

If you are on it did you get many side effects ( statins have a bad press)

Susi

2

2hiw hi susi i have been taking simvastatin since january with no side effects at all hope its working g

3

I’ve been on 80mg Simvastatin since June (or sometime like that, not seeing memory improvements, sadly). I haven’t had any side effects - I have seen improvements in some of my symptoms. My view was, why not go on it? You can always come off again if you get side effects. I haven’t had any muscle pain and I’m having a liver function test every three months.

4

I take 40Mg Simvastatin 1x/day my Neuro didn’t want to increase it to 80Mg because he didn’t think there was enough evidence to support putting me on a higher dose.

5

But there’s no evidence that it will hurt you! Your MS will probably do you all kinds of damage and the Simvastatin might stop that, or at least slow it down. Just my view, obviously.

6

l am going to ask about this next time l see my GP - shall take some information that is available online. A third trial is now being done.

My husband was taking Simvastatin - and l had read how it can badly effect your muscles. So l was concerned - then his GP actually took him off them because they were causing problems. He is diabetic - and suffers with diabetic neuropathy. My leg muscles are extremely tight and make it

difficult to move about - so perhaps they will not be for me. But the current research does seem to be in favour of them for MS.

Just google Simvastatin MS if you want to read more.

7

Hi,I was on simvastatin for several years, with no problems. About 18 months ago, my GP changed it to atorvastatin, because she was told to!

pollx

8

I don’t know how you do that thing where you copy an earlier post to later in the thread (I know, this is basic). Anyway, I’ve just copied the beginning of this thread to here with cut and paste. This isn’t right Susi - below your comment, I’ve copied the relevant bit from the research pages on this site saying that no further trials are planned. That means there are no Stage III trials currently planned and definitely none already underway. That’s why I’ve got my GP to prescribe me Simvastatin (on advice from Dr Chataway)

Simvastatin?

Anyone on Simvastatin?

on my last MRI I was shocked by the atrophy around and inside the brain.

I note Dr Chataway’s taking it to third trial.

If you are on it did you get many side effects ( statins have a bad press)

Susi

www.mssociety.org/Home/News & Research/MS research/Latest research/Treatments in the pipeline/Simvastatin

Further work

No work is currently planned but it is likely that further larger trials will take place to see if they can replicate the findings from the MS-STAT trial before the drug can be considered as an MS therapy.

When will it be available?

Research is still at an early stage and it will be a few years before we know whether this drug is an effective treatment for people with MS

9

Thanks for all your input.

and for reminding me there are no phase 111 trials planned yet.

saw my Neuro yesterday (I really rate her). But she said she couldn’t advise her patients to take it yet because there hasn’t been long enough of use to gauge any long term benefits of it in such a high dose. And the long term risk unclear.

also that GPs wouldn’t be keen at all to prescribe 80m because the side effects of muscle inflammation could be extreme - to the extent legs may balloon up and the skin have to be sliced down to help reduce it.

The muscle inflammation causes burning muscles which is just horrific to me since I am one of the small group of MSers who have severe burning neuropathic pain in both lags and pelvis, unresponsive to meds.

I am pretty conservative about taking meds anyway apart from for the pain. I don’t think the Pregabalin works at all but am terrified of coming off it because it’s pretty unbearable even with a dose of 900-1200.

So I guess my brain will just have to continue shrinking and I will just live with it.

susi

10

Here are the comments (again from this website) about the research already done. The study was giving the participants 80mg of Simvastatin. Just to note, Simvastatin is a widely prescribed drug - some people get side effects from it, many more do not. If people get side-effects, they come off the drug and the side-effects disappear. That is my understanding, at least.

Latest research

In 2012 results from a trial called MS-STAT were published in the Lancet in March 2014. In this phase 2 clinical trialinvolving 140 people with MS, 70 people with SPMS took the drug for two years. Their results were compared to 70 people with the same condition who took a placebo.

Those taking simvastatin (80mg/day) showed:

  • A significant reduction in the rate of brain atrophy (brain shrinkage) over two years
  • Better end-of study EDSS scores (a scale measuring disability levels)
  • Better end-of study MSIS-29 scores (a scale used to measure the impact of MS on somebody’s day-to-day life)

Side effects

Simvastatin is generally well tolerated and no major side effects were reported during the MS-STAT trial, but tests in larger groups of people with MS will need to be carried out to further validate its safety and effectiveness.