Hi
Already had 4 texts/calls about the latest news. Can anyone beat this?
Neil
Hiya
Is good news just 5 years till we find out. If you are heading towards secondary progressive let’s hope the results are good. Exciting news is hard to come by so glad people will get to see what life can be like.
x
Watched this on BBC this morning. I’ve been on statins for a number of years now, for high cholesterol, but I have RRMS so not much use for the study.
Not had any friends/family in touch yet but I expect it will be mentioned over the next few days, last time it was the 5:2 diet. Oh and Ocrelizumab. (and on a personal note, was recommended Almond seeds - cure-all).
People like to be helpful
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This is what the fuss is all about.
Hi… How can you get involved with the statin trials?
I remember when statins for ms was first talked about about a few years ago. I talked it over with my neuro and although he was following progress on research with it he was more concerned about the high dose involved ( multiple times higher than used for high cholesterol). He felt that the high dose could introduce other problems in the longer term. Still, interesting to see movements forward.
My neuro actually suggested Simvastatin for me when I saw him a few weeks ago and has recommended it for when I am stable after my op. My GP has agreed and set up blood test forms for when I want to get bloods tested before starting it. It’s a good thing that it’s already been approved as a cholesterol lowering drug, and is cheap, so getting on it is easy and low risk.
Sue
hope they look at those pwms who are already on simvastatin.
The phase 2 trial used 80mg, which I think is a considerably higher dose. Bring on phase 3 and thanks MSS for the funding.
This study is lead by my very own neurologist, dr Jeremy chataway. I trust him completely, he is a brilliant neuro.
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I’ve been on 80mg of Simvastatin for some years. Prescribed by the doctor running this trial, so I think it is the dose they will be using in the trial and it is the maximum dose given to people with high cholesterol. That’s how they know it is a safe dose.
I’ve been on statins for SPMS for a while (since the idea was published in The Lancet) my neuro suggested a HIGH dose statins/vitimim D combination to try to prevent any further deterioration. I don’t know whether they’re doing anything. I don’t think I’ve got any worse, although I might been fooling myself.
i started on low doses and over time they’ve gradually been increased 10/20/40mg. The benefit is during last years blood sugar/blood pressure check I was told my cholesterol was excellent, so I don’t feel bad about eating eggs/sausages or other sin full grub although they’re not good for the waistline!
Now then…this does sound positive, and chuff knows the PPMS gang need some good news, eh?
BUT
I am really sorry to tell you summat about simvastatin.
I was on it for several years, to keep my cholesterol low. Then suddenly, out of the blue, my GP rang me to say she was changing it to atorvastatin!
She told me that there had been some heart problems with simvastatin and didn’t want me to remain on it.
So do we think the only statin which is in the trial for PPMS is simvastatin and not others?
Pollsx
I’m sceptical about this one - so I’ll pass.
Fay
Polls, me too. On Simvastation for a year, changed to Atorvastatin. I didn’t even question why.
I was on Atorvastatin for years (1998 to date) and a PCT Pharmacist changed me onto Simvastatin without any notice.
My reaction was severe headaches and my GP (local cardio specialist) changed me straight back.
So it was TIM in 2007, and MS in 2008.
Statins for cholesterol OK (I do not want any more bypass surgery), but for MS using Simvastatin? MMMMmmmm no thanks.
Geoff
I’m looking into drugs for my MS support meeting tomorrow, people keep raving about Simvastatins, so I’ve asked my MS nurse if I could go onto the trial.
Bearing in mind I’m on George Jelinek’s diet (which means I’m already on a low fat diet with lots of good things like Flaxseed oil and lots of different seeds).
So maybe my diet is already doing the job.
Going downhill very slowly.
Wendy
My GP put me n Atorvastatin as she said it was more effective, but is that more effective at controlling high cholesterol? Mine was normal. If I came off it would my cholesterol shoot up? Bit of a worry!