Last reply 3 years ago
Simvastatin 80mg

Hi All,

just picked up 2 months worth of Simvastatin 80mg form my Doctors, my Neuro suggested it but it is an off label so to speak prescription.

Anyone had any experience with it?

The muscle atrophy, the most serious of the possible side effects is concerning!

Barry

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sewing-chick
3 years ago

I’ve been taking it for more than three years. I’ve never had any side effects, as far as I know. I recently had an MRI and I had very little brain atrophy. In the phase 2 studies they did on Simvastatin, they saw 45% less brain atrophy each year in the people on the Simvastatin, compared with the people on the placebo (dummy drug).


barryb
3 years ago

@sewing-chick Thank you so much for replying, I know everyone is different but it is good to hear that you had no unexpected side effects, I was just concerned when the Pharmacist queried the high level of the medication and wanted to speak to my GP (which is good) though my GP could only answer that’s what the Neuro suggested heh. So fingers crossed!


markp
3 years ago

Hi @barryb,
I was put on 40mg of Simvastain last year after a blood test revealed high cholesterol levels. I didn’t think much about it and have received no side-effects from them.

A few months later I saw my MS Nurse and mentioned the high cholesterol and so she checked to see on the system how high the cholesterol was, on seeing it she laughed and said it’s not high by much at all but was interested by the statins.

She wrote & I quote from the usual follow up note to my Doctor after I see her: “I understand you recently started him on 40mg Simvastain for raised cholesterol. There has been a small study which indicated Statins may be helpful in the progression of M.S. This evidence is not very robust but it will be interesting to see if it does help.”


barryb
3 years ago

@markp good to know Mark, I guess i will just have to see how it goes, my other concern is Aubagio which I am on also can have adverse effects on the liver but I do get blood tests every 2 months whilst on that drug.


edgarleroy
3 years ago

I’ve been on 40mg/day for a few years. No miracle cure, but maybe it’s helping to slow the progression. I think blood & urine monitoring can catch the muscle thing before it’s a big problem. My thinking is that unless contraindicated, why shouldn’t all MS patients take this? Pretty sure it’s doing no harm.


leighlincoln
3 years ago

I have been on simvastin since 2000 subsequent to a heart attack. The Cardiologist started me on 40 mg/day but later increased it to 80 mg/day .I’ve never ever heard about this drug helping with ms. Certainly good news even though I’ve been told I’m now secondary progressive. Must remember to ask my Neurologist about this connection


barryb
3 years ago

@leighlincoln

https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/simvastatin

but to summarise the main part:

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)

Barry


sewing-chick
3 years ago

@leighlincoln – the studies on Simvastatin have been on people with progressive MS.


leighlincoln
3 years ago

Barry, thanks for your informative comment. Unfortunately my EDSS score has got worse over the past year. I’m now finding that I hit all the wrong keys on the keyboard and finish up with a very interesting message that nobody, not even I, can understand it, especially if I start one letter out i.e. if I start with “d” instead of an “s” and follow that through. Oh well, just have to accept that being a top gun touch typist are sadly over.

Thanks sewing chick are you saying Primary Progressive or Secondary Progressive (whichI am).
Pat.


edgarleroy
3 years ago

PPMS – SPMS – no difference other than whether or not you had relapse(s). The important thing is how active the attacks from the bloodstream are & how fast the progressive damage occurs in the absence of relapses. We need treatments that stop both.

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