Statins

[ptlike]

Hi all.

I went to see my neurologist a few months ago. I brought up the potential treatments that hAve been developed to be told either they were not nice approved or not suitable for secondary ms. Feeling frustrated I did say to neurologist you need to get a job where you can prescribe effective treatment. I got a copy of a letter to my gp saying can we put Peter on statins so he feels we are doing something.

He previously told me he was sceptical about their benefits lol.

I must admit my legs do feel better than they did and although I won't be entering the Olympics anytime soon I am pleased I pushed for treatment. I wondered if anyone else had gained any mobility benefits from statins and at what dose do you take? I take 20mg of simvastin

All the best Peter

 

[Stumbler]

Back in the day when CCSVI was seen as a "cure", at a cost, my cholesterol levels were borderline for starting Statins.

 

I told my GP that I'd like to go on them as this might improve my blood flow, without having to go through the "Liberation Therapy". I was on 40 Mg, not the 80 Mg used in the MS trials.

 

I can't say I recall any great improvements.

 

[ptlike]

Hi stumbler, well I wouldn't say great improvevent but some which I will take. Sorry not effective for you, I guess we are all different. I wasn't aware what the study dose was so thanks for that.

Best wishes Peter

[Nindancer]

Like Stumbler I thought the dose for MS was fare higher than the dose normally given.

 

I've heard quite a positive rumblings about Biotin. There's a group in facebook so that might be worth a look

Sonia x

[Marina]

I was on the starting Phase II trial in 2009 (links at the bottom). The dose of Simvastatin has to be 80mg, which I'm afraid is most definitely higher than 20mg. I was started on 40mg, which was to be increased to 80mg a little while later. So far, as can be seen in the links below, the trial has been very successful, but the dose has to be a high 80mg and 20mg won't do it I'm afraid, Peter

 

Unfortunately, I was withdrawn from the trial as I had several side-effects quite early on, whilst still on 40mg. As these side-effects were things like depression, tearful mood changes, and various muscle aches and pains including abdominal (which might've been liver or kidneys, or the hug!), it was difficult to know whether it was due to the statins or MS. The only side-effect that wasn't also a possible MS one was nausea, as it's not uncommon when starting statins, except mine continued. These weren't super severe side-effects and some were mild, but they were noticeable enough as they appeared on starting the statins and some were in places I hadn't had aches and pains before.

 

I was nevertheless immediately withdrawn from the trial, as a precaution, as I suppose the side-effects were considered to possibly be due to the statins, as the side-effects appeared soon enough after starting on them and weren't quite my usual aches and pains or exacerbated my usual symptoms.

 

Of course, I might've been on the placebo, in which case I imagined all these side-effects (and would feel like a total idiot if that were the case ). But I doubt it as I was really excited about and keen to be on the trial and I wasn't initially at all worried about side-effects, especially as it's such a commonly prescribed drug albeit at lower doses and I wasn't aware of the majority of users having side-effects. Also, I was so convinced I was going to be on the placebo that I didn't think I was going get any side-effects at all.

 

However, I do seem to get side-effects from more and more drugs as time goes by these days, so it might just have been me reacting unusually (assuming I was on the real thing and not the placebo!).

 

The trial I was on:

Investigation of Simvastatin in Secondary Progressive Multiple Sclerosis - ClinicalTrials.gov

https://clinicaltrials.gov/show/NCT00647348

 

The result:

Effect of high-dose Simvastatin on brain atrophy and disability in Secondary Progressive Multiple Sclerosis (MS-STAT) - PubMed

https://www.ncbi.nlm.nih.gov/pubmed/24655729

 

More:

Can high dose Simvastatin help people with secondary progressive MS?

https://www.mstrust.org.uk/research/research-updates/update140326-simvastatin-and-secondary-progressive-MS

 

Simvastatin trial planned for secondary progressive multiple sclerosis

https://www.mstrust.org.uk/news/news-about-ms/simvastatin-trial-planned-secondary-progressive-multiple-sclerosis

 

https://www.mstrust.org.uk/a-z/statins

[ptlike]

Maybe in my case the placebo effect marina but I don't care, I will see if my dose is to be increased.

Do statins have a anti inflammatory effect? I'm sure I've read where they do.

Thanks for your reply marina

[ptlike]

Hi Sonia, ha I dunno Re statins maybe placebo effect for me or maybe as ms changes so it's that. The trouble regarding biotin is the industrial dose you need to take, still you'll have lovely hair and nails if all fails lol.

Best wishes Peter

Edited 10 Oct 2017, 1:27 pm by ptlike

[Stumbler]

Pharmacological grade Biotin is available by mail order from a supplier in the US. You do need a set of jeweller's scales (available from Amazon, amongst other suppliers) to weigh out the required dose.

 

[ptlike]

Hi stumbler I believe someone is now making a tablet form of biotin specifically for ms. It is a large dose and if I remember correctly it contains other vitamins. Best wishes Peter

[Stumbler]

Hi Peter,

 

Here's the weigh it yourself option from the US. (10gm gives just over 30 days @ 300 mg) @ US$39 (£30):-

 

https://purebulk.com/biotin-pure/

 

or in capsules @ US$ 79 (£60) for the same weight.

 

I did find a UK supplier that supplied the capsules, but they also wanted around £50-60 for a 30 day supply. :-

 

https://multiplesupplements.com/products/ms-biotin-boost

 

[Marina]

Peter, if you're OK with the statins, you can always try to keep on taking them even if it's not at the high dose for MS. At best, at least it'll keep your cholesterol down

 

Re it having any any anti-inflammatory effects, there are lots of articles on Google about it being so, like this one:

http://www.medscape.com/viewarticle/733508_5

Edited 12 Oct 2017, 11:13 am by Marina
added a few words

[ptlike]

Hi all, I was told by ms nurse when questioning dose I was on. Trial is a dose range from ?? Too ?? guess no answer to that lol. Adding plenty of cream to my coffee without worry

[Marina]

Trial is a dose range from ?? Too ?? guess no answer to that lol.

 

I'm not too sure what you mean, Peter? Or are you saying your MS nurse hasn't a clue about the dosage for statins as an MS treatment? If it's the latter, then maybe give her the inks I posted earlier, where it's clear the trial dose started at 40mg and was moved up to 80mg, where it then stays?

[ptlike]

Well marina your probably right re: ms nurse or she doesn't wish to give an opinion on.

Best wishes

Peter

[ptlike]

Hi marina ms nurse written to say she has no experience regard statin dose

Best wishes Peter