Potential new treatment for SPMS

Everyday living
1

Hi everyone

I thought this looked interesting when it came up on my facebook page the other day. It certainly helps with the theories that a low fat diet is the way to go! From now on I’m going back to the lentils.

Published date: 10 Oct 2012 at 11:16AM

Researchers announced today they have found a treatment that might slow the progression of MS in people in the later stages of the condition.

In one of the first positive clinical trials for , – a cholesterol lowering drug – was found to potentially benefit people with (SPMS).

In the phase 2 clinical trial involving 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 .

Those taking simvastatin (80mg/day) showed:

  • A significant reduction in the rate of brain (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)

What were the ?

There were no major side effects associated with simvastatin in this trial, but further details are yet to be provided.

It’s worth noting that in June 2011 the Food and Drug Administration (FDA), the US drugs regulator, issued new safety recommendations for simvastatin, citing muscle injury (or myopathy) as a risk associated with the 80mg/day higher (as used in this study).

What does the MS Society think?

Nick Rijke, Director of Policy and Research at the MS Society, said:

"People with progressive MS are in desperate need of treatment options and the results announced today are an encouraging first step towards a new and potentially cheap treatment for people with the condition.

“But it’s early days still, and further clinical trials will be crucial in determining the safety and effectiveness of simvastatin in people with MS.”

What happens next?

Today’s announcement is the first time the results have been shown to the MS research community. They will now need to be published in a peer-reviewed journal where they will be scrutinised by the scientific community.

Scientists will then need to replicate these findings in larger clinical trials before the drug can be considered as a MS therapy.

Researcher and funders

The study was led by Dr Jeremy Chataway at the National Hospital for and Neurosurgery, University College London and Imperial College, London. It was jointly funded by the Moulton Foundation, the Berkeley Foundation, Multiple Sclerosis Trials Collaboration and the National Institute of Health Research.

2

Statins are known to cause muscle injury - myopathy. My husband has been taking simvastatins - he is diabetic - and now has myopathy - his GP has told him to cut out the statins - and he is slowly improving.

lts one step forward and two back - the last thing we need is something damaging side-effects.

3

Thanks for that F,'cos statins and a visit to my drug dealer,oops GP just occurred to my neuron, I think I’ll leave well alone.

S xx

4

the last thing we need is something damaging side-effects.

I agree, I try not to take drugs if can help it but a low fat diet can’t hurt.

Wendy x

5

Please be careful with the assumption any kind of diet “can’t hurt”.

My Mum went on a radical low fat diet, after being told her cholesterol was too high. She didn’t do this under medical supervision; she just took it into her head that she shouldn’t eat dairy any more.

Now, several years on, she’s been diagnosed with severe osteoporosis, after breaking her ankle very badly, in three places.

I’m convinced shunning dairy played a very major part in this. She was so focused on reducing the cholesterol that she neglected her other nutritional needs.

Women are susceptible to osteoporosis in later life, but I gather those of us with MS even more so. So please be careful not to do what Mum did, and try to solve one problem through diet, only to cause another. She’s back on cheese and chocolate now, because she’s even more fearful of the osteoporosis than of the high cholesterol, and is realising she didn’t do herself any favours.

Tina

x

6

That makes sound sense Tina, I’d love to go on a diet as I’ve put on so much weight through taking these different drugs, especially as I also have osteoporosis. I think I’ll stay fat.

Janet

x

7

Hi Janet,

I’m sure it’s OK if you do it under the guidance of a proper dietician, and make sure you’re still getting everything you need.

But I think cutting out or radically reducing whole food groups, as my mum did, is risky. That was a knee-jerk reaction, and she never should have done it. She realises that now.

But although we were all worried, none of us could stop her. She wasn’t even fat to start with. She just had high cholesterol; it’s probably a genetic predisposition.

Unfortunately, she had to learn the hard way, and have a nasty accident, before it became obvious she’d damaged her health. I wouldn’t like anyone else to go down the same path, thinking they were helping themselves.

Tina

8

Thanks for the information. It would be very helpful then.

9

I looked at this with some interest - since I have taken Simvastatin since the late '90s for a heart condition (must keep the chloresterol down).

So I picked up the box and read the dose - the dose to maintain a low chloresterol is 20mg per day. The dose in this study is four time that.

I wonder if the participants in the study have subsequently shown any side effects (or, indeed, even been monitored for any).

Geoff

10

There is a bit more informatiom on the Barts & London blog.

http://multiple-sclerosis-research.blogspot.co.uk/2012/10/ectrims-ms-stat-trial.html

11

I participated in this trial and found out on Wednesday that I was on the active drug. I had no bad side effects and yes, I’d like to go back on Simvastatin at 80mg, not surprisingly!! Of course all participants were monitored throughout the 2 year study.

I think it’s good news and there’s been more positive reporting from ECTRIMS, as those who read Gavin Giavannoni’s blog know.

B x

12

Why Bouncy that’s fantastic news and no wonder you are looking to buy a trike. I hope your wish is granted and continue to get good benefits.

13

I’ll stick to my low fat (mainly veggie diet) but still found it interesting, thanks for your input.

Wendy x

14

I’ve taken simvastatin since I was diagnosed with diabetes, and it was clear I needed help with my cholesterol levels. A low fat diet didn’t do the job for me, so I went onto simvastatin. I now take 40mg a day having gone up from 20mg a day.

Having a low-fat diet doesn’t necessarily mean you won’t have high cholesterol levels. It’s not just about how much fat you eat, it’s also to do with what your own body’s biochemistry is like.

You can have too little fat in your diet - some vitamins are water soluble and some fat soluble. So if you don’t eat fat you may not getting the vitamins you need. Taking lots of vitamin pills isn’t the best way forward in my view! And it CAN hurt if you ingest too much of any vitamn.

There are no simple fix-its in this life.

I will be testing the 80mg simvastatin option as soon as I get advised that it may be worth doing. I plan to contact my MS nurse to see what their view is!

15

Thank’s for that Ellen C, of course everyone is different. We will have to wait and see how these trials go. I have had a cholesterol test and my cholesteral levels are quite low for my age. I put this down to cutting out meat over 20 years ago. (After what I now believe was my first MS attack). I didn’t have another attack for 10 years and MS only took hold of me when I took my eye of my health, didn’t eat sensibly and the menopause came along.

I do eat fish now and drink low fat milk (it has more calcium added) you can still eat a fairly low fat diet which includes dairy just not at high levels. Everything taken to the extreme can be dangerous. I couldn’t stay on the Jenilek diet as I found it too difficult to keep to. I haven’t been that good at keeping to a good eating regime recently but reading this article has made me realise that it just might be worth it.

Wendy x

16

Aah thanks for that. There was some mention on an ECTRIMS update about a study rehabiliation using static bikes, whichhas inspired me, as I have such a bike, to get mounted and start pedalling instead of procrastinating!

B x

17

EllenC, I have also contacted my MS nurse to aske about the possibility of going back on Simvastatin at 80mg. BTW I had my first episode after having been veggie for 8 years - I was found to be deficient in B12, which can mimic MS, prompting me to eat meat again.

It’s good that more trials and work are being done in the progressive field. If you watch some of the videos from ECTRIMS, you can see the passion of the researchers, and their desire to find some solutions (ok, I know cynics would say they are looking for recognition for their research but I prefer to see the best in people and remain optimistic!).

B x

18

When i read that it reminded me of the two side effects of any drug trial.

  1. You might not get anything helpful at all.

  2. You might get horrible side effects.

When they do find a drug that does something fantastic, imagine learning you didn’t get it…not sure how I’d feel about that, then there is the other side of the coin, imagine getting it and then having to stop for so many years while they test it to ensure it’s safe for mass distribution.

The results are vital, the process has many pitfalls for participants.

19

I’m a type 1 diabetic with a non working Thyroid gland and on 175 mcg of thyroxine, Cholesteral was at 22 once

GP put me on statins 80mg and have been taking this for 6 years now, I have been taking them through diagnosis of MS and while being on Copaxone and Tysabri and now Rebif 44.

I have been doing the gym for over a year and have bigger stonger muscles and now look super sexy

Anyway… I never had any muscle issues from taking statins and did go from RR to RR highly active, Taking Rebif in conjuction

with going to the gym has slowed the MS down or kept alot of the symptoms from flaring up.

I do remember that when I first took statins I did have slight muscle ache but that vanished after a few months.

Few years back MRI scans showed I had inflamation on the brain and also the odd new Lesions popping up while taking Copaxone.

I read a while back that low cholesterol is also bad as statins not only lower the bad cholesterol but the good also and is needed to make myelin and if you have low I think below 3 then this affects the brains myelin production with mood swings leading to depression.

So if people taking 80mg of statins and don’t have high cholesterol then I suggest that you start having a kebab once a week just incase.

http://www.dailymail.co.uk/health/article-1262130/Statins-Doctors-fear-effects-devastating.html

20

l looked at the Daily Mail article - and thanks for posting it. Shall make sure my OH reads it as he has type 1 diabetes and was put on statins about 5yrs ago. He now suffers with myopathy/ peripheral neuropathy- can not feel the tips of his fingers/toes and cannot feel his nose running. He walks with a side to side shuffle. l have noticed that he has a lot of muscle wastage on his legs and arms. He swims twice a day doing 40lengths a time - to try to keep fit - and to reduce the amount of insulin he needs.

l have mentioned to him several times about statins doing harm rather then good in the long term and typically he ignored me!!

lt was only when he mentioned to his GP how he was feeling - and then going for an mri - that his GP - did express his concern that the statins should be stopped. l hope that the damage they have done is reversible - but somehow l don’t think it is. The statins destroy Co Q 10 - which damages the myelin. The GP has said that his symptoms now are MS ‘like’.

F.