EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Thu Mar 30, 2006 1:54 pm Post subject: Experiences with Statins for MS
This is a call for our members who currently are, or previously have taken, Statins for the treatment of MS to please post your experiences with the therapy at a new project that has sprung out of our work at This is MS, aptly titled "the Experience Project"
Born out of our experiences (no pun intended) here at This is MS, where a wonderful community has formed based (originally) on shared and common experience, the Experience Project extends that reach of reassurance and wisdom provided by people who have "been there before" to all people and all experiences.
Specifically, while MS can certainly shape a person, it does not *define* them-- each of us are complex individuals with thousands of experiences that make us who we are, of course one of the most potent being our experiences with Multiple Sclerosis.
Each one of those experiences would be worthwhile to record for your own history, the therapeutic effect of writing, and the benefit it could provide to another who is just now facing something you have already been through (and survived). Your experiences will undoubtedly help countless others.
Participation is of course absolutely free. We have been working passionately on this project for a long time, and really believe in its potential to help others. Taking a few moments to share your experiences with the MS therapies you have tried will help us make that a reality.
Read Others' Statin Experiences _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Sat Apr 08, 2006 3:30 pm Post subject:
sure thing! There's no reason to re-invent the wheel. _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Joined: Nov 06, 2004 Posts: 379 Location: Ottawa, Ont. Canada
Posted: Thu Nov 30, 2006 9:12 pm Post subject:
Everyone knows that I have been adament about the benefits of Lipitor for MS. Since I will be starting the fingolimod trial on Dec. 7th. I stopped my 80 mg of Lipitor. ooooooohhhhhhh what a change. My foot drop is so bad. I missed my lipitor so bad that I restarted it 2 wks ago. Now, I can't get back to where I was. I am now on 40 mg OD and barely feeling the positive aspects of it. I must admit the spasticity is better but I was so much better in Oct. before I stopped it. I can't wait to get my new drug and I wonder if it will go what the lipitor was doing for me. I have high hopes.
I am thinking that I will be a bad patient and I will take some Lipitor even if I am in the study (the drug is not contraindicated) if this new drug can't give me what the lipitor did in the past.
Now I wonder if I will ever get that effect again.
Joined: Nov 06, 2004 Posts: 379 Location: Ottawa, Ont. Canada
Posted: Sun Dec 03, 2006 10:09 am Post subject:
The lipitor really helps me with the spasticity. I am now back at 80 mg OD and I am better. I will keep it up until the first dose of FTY720 on thursday. What will I do if this new drug doesn't do all that Lipitor does for me
Joined: Jul 28, 2005 Posts: 1330 Location: Sydney, Australia
Posted: Mon Dec 04, 2006 1:22 am Post subject:
carolew wrote:
What will I do if this new drug doesn't do all that Lipitor does for me
Look after yourself as a first priority, and take the lipitor.
I hope to go onto the trial for this as well. I plan to keep taking the lipitor, and if this stuff works, I would expect to be doing even better.
The researches have told you there are no contraindications, and from my understanding they work on totally different biological mechanisms.
By stopping the lipitor, if you go downhill, there will be no way to tell if it doesnt work at all. It may just not work as well for you as lipitor. I think the real test is if it helps you more than not taking it. ie while still on your existing regimine.
Seriously, look after your health as a first priority.
Joined: Nov 06, 2004 Posts: 379 Location: Ottawa, Ont. Canada
Posted: Mon Dec 04, 2006 7:27 pm Post subject:
Robbie: It's that locking exactly. Instead of getting up like a stiff stick, with the lipitor, the spasm are much less. Gradually, with this lipitor, I realized that it is easier for me to get up from the toilet bowl (!) and any other chair.
I am not sure it works the same for everyone but it does magic for me.
Thanks CureorBust: I agree with you. I may just stay on it since it is not contraindicated but the FTY720 and the lipitor both affect the liver. So I would really have to watch my liver function tests.
By the way, TODAY, I saw the neurologist and they gave me 3 months supply of the study drug. OH WHAT A FEELING !!!For the first time, they are accepting me into a study. WOW. Finally
I could be on the placebo but I sure hope not.... I feel like I have my lipitor to fall back onto if needed but I would prefer to really have something active.
Posted: Wed Aug 22, 2007 11:00 pm Post subject: Has anyone tried the "natural" statin drug?
A friend of mine with MS thinks that she never got a severe form because she had been taking statin drugs for cholesterol for many years.
But my main question is about red rice yeast, which contains the natural form of the active substance in statin drugs. Has anyone tried this form, and what have been the results? Any advice on dosage, etc.?
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We encourage you to also visit our Multiple Sclerosis story and support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no one life experience-- like having MS-- defines a person. It now covers over 2 million life stories. Find and share yours!
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