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Simvastatin MS-STAT2 Trial

I’ve asked if I would like to go on the Simvastatin MS-STAT2 Trial !

I’m thinking of saying yes but dont really know much about it ?

Has anyone trialed this ?

I tried taking Simvastatin, not as part of a trial, but just because my neurologist thought it might help in the future. I stopped it after a couple of weeks as I found my legs felt weaker than normal. And they’re normally utterly feeble.

Hopefully someone will answer who’s either been on the trial, or just taken it for longer than 2 weeks.

Sue

Hi Ssssue,

I had an assessment today to see if I could join the study, lots of blood taken and some physical stuff done, wont know for a week or so if I will be offered a place on the trial.

Its a double blinded study so no one will know if I’m on Simvastatin or a placebo ?

Apparently its the 2nd part of this study and involves 1200 people with MS, I think he said 25 are from my local clinic, but with will be a staggered starting dates.

Each one must be SPMS and must of shown an increased deterioration in their condition over the last 2 years.

The consultant said its the people on the placebos that are actually more important because its them that might show that their condition has worsened over the 3 year study, where as the ones on the actual drug might not progress because of the drug but might not of progressed anyway without the drug.

I think thats how he explained it ?

The dose itself starts off double the normal dose but then increases even more over the following months.

Side effects might be muscle and joint pain but also issues with liver function and at worse kidney problems, basically some studies have shown that high dosages of this drug can cause muscle break down, where the muscles do actually start to break up and this muscle tissue can even become embedded in the kidneys leading to kidney failure.

The statistics are about 1 in 1200 will have the more serious side effects.

The impression I had, and I’ll ask this question on my next visit, is that this drug (on the first trials) showed more benefits to people with lesions within the brain as opposed to the spine.

Anyway I’ll just have to wait now for the blood results to come back and see if I’m accepted ?

So I’ve had my assessment to see if I can join the study.

I’ve been given a date to start but have to wait while all the blood tests ect are checked out.

Apparently the dosage of the drug is huge and can effect the liver and kidneys, which I’ve had issues with in the past because of certain drugs that I was prescribed.

If I do get onto the study I’m hoping all will stay within good levels, thats if I get the actual drug and mot a placebo ?

Watch this space, as they say !!!

Been on this trial now for a good few months.

Dose now 80mg daily.

initially my liver function went through the roof, so I automatically thought (along with consultant) that I was on the actual drug and not the placebo, however after a few more blood tests, spread out over a couple of months my liver function dropped back to normal and has stayed there ever since ?

Therefor we are thinking that the spike in my liver function could of been something else at that time or perhaps it was the drug and now things have settled ?

So basically I could be on the drug or the placebo.

I’ve not seen any other side effects and I’m having regular blood tests.

There is one thing that I’ve noticed, my sleeping is not like it used to be, I can wake up 3 or 4 times a night and then have problems getting back to sleep.

I think I read this is aside effect of Stimvastatin ?

So maybe I’m on the drug after all ?

a lot of people are prescribed simvastatin as they have a high cholesterol (sp) level. (Don’t think the dosage is as high as it is for people on the trial.) Some of those on simvastatin will have m.s. - I wonder if the researchers have considered monitoring those people as well.

Apparently the 80mg dose is high for this drug and is part of the trial.

The thought process is that certain statins in high doses slow down progression ?