Last reply 3 days ago
Ms trial – Simvastatin or Placebo pill

Hi All. I haven’t posted for a while. Just trying to see if anyone here is on above drug. I haven’t been on anything since having my daughter 6 years ago. Had annual appnts with neuro but apparently there wasn’t need in my case as I’m managing my symptoms very well. After my last October appnt neuro mentioned I should start treatment as I’m in Spms stage now which scared me a bit. I’ve received a letter about a trial for Simvastatin. Has anyone gone through it? Thanks for reading. Mags

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lisa_morghan
1 week ago

Yo so if your manager your symptoms well then stay what you’ve been doing i mean dont iqnore do your homework
Talk to doctors just do whats your gut
Is telling you !!! Listen to sell


itsmewithms
1 week ago

I pulled up an article as I hadn’t heard of this drug or trials yet and after being diagnosed in 2005 with RRMS they feel I am transitioning into SPMS. I have always been on DMTs. I was on Copaxone for 11 years and the last 4 on Rebif. I am now on Ocrevus having completed the first two half doses last month.

There are articles out there like : https://multiplesclerosisnewstoday.com/simvastatin-for-spms/

Also a mention of the study at about minute 5 of this https://www.youtube.com/watch?v=zoGYkt-aKWA

It sounds very promising if you feel you can afford to participate…not in money but in time. If you feel your condition is stable enough to risk that it doesn’t work or you get the placebo. You could be lucky to be in the area to involved-


itsmewithms
1 week ago

I should also mention that I was in a clinical trial when I was first diagnosed to see if adding prednisone (steroid) into our treatment for 5 days a month would help manage MS. They concluded the study early that it did not…so it failed…but having something fail is just as important as succeeding as now they knew something not to do 😉 I felt there was little risk to me as I stayed on my DMT and it was just about adding something to the treatment to help…not take something away.

So- it may have gained the MS community some benefit and for me there were many perks. I received “free” MRIs” that were reviewed by a top neurologist team, free Dr visits with an MS specialist at great clinic and bone scans as that was part of the study.It did take like 1/2 day visits I think it was quarterly…so there was a time investment as well. In all I am glad I participated.


magdalenam
4 days ago

Thank you @itdmewithms. I’ve decided to go for the trial. They won’t give me any DMT for some reason anymore. So I’ll take any help there is. Waiting for the call now to arrange for first visit.


watsoncraig
3 days ago

Took Simvastatin (for High Cholesterol) a while back and changed to Atorvastatin as Simvastatin was giving me weird dreams.


guinness
3 days ago

@watsoncraig I was also on Simvastatin from 2014 after suffering a stroke, 4yrs before I was diagnosed PPMS in 2018 only recently changed to atorvastatin it’s just another blood thinner.

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