Hi, I saw on local news that simvastatin is being trialed for secondary ms. Apparently its been trialed in London for a few years but they are appealing for more volunteers. I was wondering if anyone eles has been on this trial?
I’ve been taking atorvastatin for about five years now my gp said it more effective than simvastatin. I was put on it after my neurologist suggested it in combination with vitamin D3 I’ve since been taken off that combination as it isn’t recommended now. I can’t say anything about it’s efficacy as nobody knows weather I would or wouldn’t have deteriorated more in the five years, my cholesterol is however, excellent.
if you want to volunteer want harm can it do, yes all drugs can have side effects even good old aspirin, I would keep a record of your symptoms that are similar to known side effects before starting on them so you will know what symptoms are normal for you and not side effects from the drugs.
I have recently joined this trial in Southampton.
The NHS like this because it is a fairly cheap and licenced already, so if it is seen to reduce the rate of disability progression it will be great news.
M
I`ve been on atorvastatin for a long time…prior to that it was simvastatin…they told me it was causing muscle problems, so changed it.
I went on a statin to lower my cholesterol.
I dont know anything about statins being used for MS. What are they supposed to do?
Boudsx
I was told that a statistical correlation was seen in groups taking statins for cholesterol management who also had SPMS and a difference in disability progression.
As the drug is already approved for use and is relatively cheap, it was deemed necessary to carry out a double blind trial with the active drug and a placebo to try and prove a benefit.
More qualified info here: https://www.mssociety.org.uk/research/latest-research/latest-research-news-and-blogs/ms-stat2-trial-for-secondary-progressive-ms-begins-recruitment-across-the-uk
M
Thankyou for all replies.
I was diagnosed in May with SPMS but i havent had a LP or blood tests or much eles to be honest - I have had MRIs over the years for different symptoms. My neurologist has retired without me even meeting him due to covid, and my MS nurse is the only one currently in the county so i havent been getting much support. She told me at the beginning there wasnt any drugs available for SPMS - waiting for a new drug called Mayzent to be licenced, this should be available from March, but im surprised she didnt mention the simvastain trial.
I dont know if i should wait for Mazent or go for the trial - MS nurse is currently on holiday
Sorry to put a damper on things, but I was on 60mg simvastatin tabs for about 30 months with no slowing of my spms symptoms and consensus of opinion is that 60mg is not healthy for your system. I’ve been on 40mg atorvastatin for about a year now, don’t expect it to aid my ms and was prescribed for a heart condition.
I’ve mentioned on this forum previously that I’ve tried most common remedies to slow the progression and nothing works.
Don’t build your hopes up.
I’ve been on this study for around 18 months.
The dosage is 80mg at night, apparently that’s when the body produces cholesterol .
I recently received some info regarding the study and how its progressing ect, it mentioned that there are 1200 people around the the UK with SPMS now the study, which lasts 3 years.
Obviously when undertaking these types of studies you do not know if you are on a placebo or the actual drug, not even your clinic will know as its double blinded.
At the end of the study you’ll find out if you were on the placebo or real thing…
I think you’ll be better off asking your MS clinic if you can join, however, I was under the impression that this is the final part of the trial, I think it’s already gone through some other stages, but I might be wrong ?
Personally it has done nothing to help with my SPMS, but like I said I might be on the placebo ?
However, when I say this to my MS consultant, his reply is something like, " You dont know how you would be if you were not taking the drug" in other words we have to just go with it and wait to see if I’m on the placebo or not, and then also compare all the other peoples results who were on the trial.
High doses of this drug can effect your liver function so it’s closely monitored, when I first started on the trial the blood tests for my liver function went absolutely through the roof, so obviously we all thought (including the MS clinic) that I was on the actual drug, I was asked if I wanted to abort but I decided to stick with it, after about 3 months of constant blood tests my liver function started to normalise, and it has stayed “normal” ever since, so it might of just been a coincidence at that particular time something else threw out my liver blood test results ?
This drug can also effect kidney function at high doses.
80mg is looked on as a fairly high dose but not extreme.
You are given a diary to note any symptoms ect.
Another reason I took up the offer of joining the study is that my MS consultant said that people who put themselves forward for these types of studies usually get first lick of the lolly when something is found to have positive results and then approved as a treatment, you basically get a nudge to the front of the queue.
You also get to see your MS consultant every 3 months during the trial for a physical & mental assessment, so that’s another benefit eh !
Obviously Covid has thrown a spanner in the works there but you still get an over the phone assessment until the face to face assessments are started up again.
For me it was a no brainer to join up.
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Thankyou for your replies. I have emailed my MS nurse and will wait to hear from her.
I know the trials have been going on for some time but it was strange for it to come on the news asking for volunteers.
It would be nice to have more contact with the MS team, but hopefully i will soon get puton some type of medication.
Take care
High doses of Simvastatin can cause muscle break down, hence the trials.
Apparently Atorvastatin reacts differently to Simvastini in regards to SPMS slow down.
Best check with your MS clinic, my understanding is that these are the summing up trials to prove or disprove theres a benefit ?
Hi I’ve just applied for the trial and received the paperwork this morning to check I still want to go ahead. The issue is I live in Scotland, the Highlands, and London is a fair distance not withstanding the covid down there! I do not have an MS nurse/doctor to ask if there is a trial up here, anyone know??
Hi - I think that the Anne Rowling centre in Edinburgh is an active site.
I typed “MS Stat2 location Scotland” into Google and this came back : MS Trial Featured in the Scotsman | Edinburgh Neuroscience
and
Good luck
Mick
As mentioned before, I was prescribed 60mg simvastatin tablets for two and a half years and never slowed the spms progress.
It never slowed my PPMS either.
Boudsx
Thank you Mogace. I emailed the person on the contacts and had a phone call from her this morning. They are still asking for people to join the trial up to June. Because of the pandemic they are not currently taking on anyone new. I will get a follow up call in February.
I’m on 80mg simvastatin/placebo for the 3 year trial, and have ben on it for around 18 months, maybe a bit longer ?
If it turns out that I was actually on the simvastatin as opposed to a placebo, then like yourself I dont think its has slowed down my progression to a point where its very noticeable, however, theres always the argument that my progression might of been even quicker if I had not been taking simvastatin ?
This is the exact argument my neuro makes.
I guess the only option then is to stop taking simavastatin and gauge the progression for another 3 years and see if it speeds ups, which lets be honest nobody is going to take that chance !