Zocor (Symvastatin)

[Echo2099]

Anyone being prescribe Zocor (Symvastatin) for SPMS?

Since I am now JCV positive and there really isn't anything out there for SPMS, Doc suggested Symvastatin to help with brain atrophy and progression. He said the trials are encouraging, so I agreed.

We started at 20mg at bedtime and increased dose by 20mg per week to max of 80mg at bedtime.

So far no side effects and next MRI is still a month away, so don't know if it is helping with atrophy yet.

Anyone?

Thanks
Echo

[Myoak]

Hello Echo,

Thank you for posting about simvastatin. I will post an article below for those who may be interested in why this may be a treatment option. There was a 43% reduction in brain atrophy in this Phase 2 trial using 80mg of simvastatin.

Probably, there will be no Phase 3 trials because it would be difficult to monetize a statin drug like simvastatin. Pharma would love to develop a treatment for SPMS but not with a cheap generic which is virtually profitless. I am so sorry that is the world we live in, but that is the reality.

Those who want to try this treatment will be forced to make a decision based on the limited evidence from Phase 2 trial because we likely will never see the comprehensive Phase 3 trials required for FDA approval and licensing as a DMT for MS.

In this trial brain atrophy was reduced by 43%. The relatively high dose of 80mg would make staying on top of side effects, such as muscle weakness, prudent, IMO.

No easy decisions in MS, ever, it seems. We are always balancing competing values to arrive at a decision we can live with and sleep with. All of us, doctors included, make our best guess and go with that. And that is good enough. Of course, monitoring with MRI is very helpful in assessing effectiveness to see how our guess is going.

God bless you and everyone else contemplating this issue. Below is a relevant article:


Chataway et al. Effect of high-dose simvastatin on brain atrophy and disability in secondary progressive multiple sclerosis (MS-STAT): a randomised, placebo-controlled, phase 2 trial. The Lancet, 19 March 2014. doi:10.1016/S0140-6736(13)62242-4 .

Background: Secondary progressive multiple sclerosis, for which no satisfactory treatment presently exists, accounts for most of the disability in MSers. Simvastatin, which is widely used for treatment of vascular disease, with its excellent safety profile, has immunomodulatory and neuroprotective properties that could make it an appealing candidate drug for patients with secondary progressive MS.

Methods: We undertook a double-blind, controlled trial between Jan 28, 2008, and Nov 4, 2011, at three neuroscience centres in the UK. Patients aged 18—65 years with secondary progressive MS were randomly assigned (1:1), by a centralised web-based service with a block size of eight, to receive either 80 mg of simvastatin or placebo. MSers, treating physicians, and outcome assessors were masked to treatment allocation. The primary outcome was the annualised rate of whole-brain atrophy measured from serial volumetric MRI. Analyses were by intention to treat and per protocol. This trial is registered with ClinicalTrials.gov, number NCT00647348.

Findings: 140 participants were randomly assigned to receive either simvastatin (n=70) or placebo (n=70). The mean annualised atrophy rate was significantly lower in MSers in the simvastatin group (0·288% per year [SD 0·521]) than in those in the placebo group (0·584% per year [0·498]). The adjusted difference in atrophy rate between groups was −0·254% per year (95% CI −0·422 to −0·087; p=0·003); a 43% reduction in annualised rate. Simvastatin was well tolerated, with no differences between the placebo and simvastatin groups in proportions of participants who had serious adverse events (14 [20%] vs nine [13%]).

Interpretation: High-dose simvastatin reduced the annualised rate of whole-brain atrophy compared with placebo, and was well tolerated and safe. These results support the advancement of this treatment to phase 3 testing.

[SNOOPY]

Hi Echo2099,

I would suggest you use a statin with caution as there can be some serious issues from them. My Neurologist was not happy when he heard I was taking a statin.

I consider statins dangerous and will never use them...ever.

There was a thread about this topic last year that might be of interest to you.
http://www.msworld.org/forum/showthr...SPMS-Treatment

I hope you find Zocor helpful and have no adverse side effects.

[jreagan70]

Hi Echo:

I was among some MS patients who was put on Lipitor years ago after some of the first information came out that it might be beneficial for MS. Follow-up studies showed no real benefit, and I had to stop due to the usual intolerable statin side effects. What's of note here is that the statin side effects can be some of the same effects caused by, and blamed on, MS.

I hope you continue to do well. But from experience, my recommendation is that if you think your MS symptoms are getting worse, don't stay on the statin and hope things will get better. There's no reason to stay on it if it's making you miserable (and remember, hope for symptom improvement is not the reason to be on it in the first place).

Instead, there's a good chance that the side effects may be from the statin itself, so the better course of action is to stop the statin first and see if the symptoms get better.

It really seems like the most enthusiastic proponents for a statin for SPMS are those who haven't actually taken a statin themselves. So for me, ditto what poster Snoopy said. Please be cautious and vigilant. And the minute you start to notice a loss of function of any kind, please get off it. Primum non nocere.

[Echo2099]

Thank you all

Thank you all for the concerns and cautions. My neurologist is the one who prescribed this medication. He did discuss the side effects with me and scheduled routine blood work and tests to monitor the effects of simvastatin. He also advised me to call him if anything changes or if I have any concerns. And believe me, I am watching very closely.

Thanks again.

[Myoak]

Echo,

Aren't MS treatment decisions fun? I swear Solomon would have a difficult time so don't get discouraged. We review all the info, gather all the facts and testimonies we can, get the counsel of knowledgeable friends and doctors and take the plunge... by that I mean choose a path for treatment.

Snoopy and jreagan have added their testimony and those are very valuable but I would not advise going on those alone. Why? Because each person has a different physical body. Both of them agree and they have no disagreement if you read carefully, they are not trying to talk you out of going on simvastain, they are giving their experience with statins.

Some studies have shown a benefit using statins in MS and some studies were of neutral. Simvastain is one which did show benefits and that trial abstract is shown above. Also, in this study, what did it say about side effects? Simvastain was well tolerated and there were no differences in serious adverse events between those on simvastain or on placebo.

There were only 140 participants. But stats are what they are. Sure, it would be wonderful to get more data from a larger trial, but Phase 3 is unlikely because simvastatin is generic and that makes it difficult to recover the investment required for large trails.

Lastly, I would note that possibly neither Snoopy or jreagan were on simvastatin. To assume all statins have similar effect may not be accurate, we have no way of knowing relative to MS. We do know that simvastatin did have good effect in this MS trial and other statins were neutral in other MS trials, that much we do know.

No one is trying to talk you into, or out of anything, Snoopy, jreagan, or myself. We are just trying to present the most comprehensive picture possible.

There are issues with statins to be aware of, and it is very important to be vigilant about them but there are also millions and million of people taking statins who are not suffering serious side effects. Of course, those who have are going to stay away from them and they should absolutely give their testimony. But we also have to put those testimonies in the context of the whole picture of those taking statins.

What we do know is that in this trial of 140 MSers, those taking 80mg of simvastatin experienced no differences in serious adverse events between placebo. And, we know brain atrophy was reduced by 43% on simvastatin compared to placebo.

Best wishes for your success whatever way you go.

Also, you should be checking out LDN, IMO, if you don't mind me adding my opinion.

We are all wishing you the best! Thank you for posting, these discussions are helpful for everyone!

[there]

Wow, have not read about this one for years. I also tried out simvastatin 10-15 years ago and quickly stopped as the 80mg side effects were intolerable.