New to Lipitor - So glad I found this chat board!

Discussion of statins (Lipitor, Zocor, etc.) in the treatment of MS.
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New to Lipitor - So glad I found this chat board!

Post by HopefulDoc » Fri Jul 28, 2006 10:25 am

I am a 38 YO Public Health Doctor (DrPH) (Epidemiologist) who was diagnosed with MS 1 year after finishing my Doctorate in 1997. Was on copaxone for a while and solumedrol - which literally almost killed me. I've chosen to be med free for 3 years but am sadly watching this disease take its course and take control over my life. I am now almost unable to walk. My girlfriend - an MD trained at UCSF has been batteling MS herself for nearly 12 years and was the one to call me (2 weeks ago) and tell me about the lipitor she has been taking and the success it has had with helping her regain function especially balance. Of course, she is a sample size of only "1" although I have feverishly been searching google for results of clinical trials on HUMANS (not mice). Compelled by a combination of faith, desperation, and a basic mistrust of the medical/pharmaceutical industries, I decided to take a chance and started taking lipitor a couple days ago.

Can any one out there tell me how llong it took to start seeing inmprovemements in your case. Also - can anyone lead me to info on results of human trials. I am going to need SOMETHING on human trials to give my primary physician when I ask her for a RX. I got this one under the table - but I cant get away with that for more than another month. If not, how were you able to convince your PCP to prescibe lipitor to you. My girfreind is clueless on what I should do since she can write her own scripts. Its so unbelievable that one would have to steal, cheat and lie for something like lipitor when the system feeds us drugs that are vistually lethal. HELP :cry:

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Post by Shayk » Fri Jul 28, 2006 5:15 pm

Hi and welcome HopefulDoc

We're so glad you found us too. :)

I am not on a statin but can report I was and taken off when my liver enzymes became elevated. Interferon trumped staying on statin from the neuro and gp's perspective. What convinced my gp to prescribe was info from the NMSS site on the oral trial. I think the NMSS site "letterhead" helped. I don't have that link, but here are some abstracts, if you haven't found them yet, that might help convince a gp to give you a script. The first one is a reference to the open label clinical trial.

Simvastatin in RRMS
Number and volume of Gd-enhancing lesions declined by 44%, (p<0.0001) and 41% (p=0.0018), respectively. Treatment was well tolerated.
Are Statins a Treatment Option for MS
Statins might be beneficial for MS patients as monotherapy or as an add-on to established disease modifying drugs. As the evidence of the benefit of statins in MS is currently insufficient, large controlled clinical trials are needed. The first of these trials is about to start.
Putative Actions of Statins in MS—Comparison to Interferon Beta and Glatiramer Acetate
Furthermore, in vitro experiments with human immune cells have documented an immunomodulatory mode of action of statins comparable to that of interferon (IFN)-beta. An open label clinical trial assessing simvastatin in MS revealed a significant decrease in the number and volume of new MRI lesions and a favourable safety profile.
Maybe this helps a little bit. I know there are others much more knowledgeable on the topic who will eventually chime in.

Again, welcome. Here's hoping the lipitor and LDN work for you.


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Re: New to Lipitor - So glad I found this chat board!

Post by CureOrBust » Sat Jul 29, 2006 12:28 am

HopefulDoc wrote:Can any one out there tell me how long it took to start seeing improvemements in your case.
I started Simvastatin while i was on rebif, and didnt notice any difference. When i stopped rebif, i felt the tingling in my hands fade faster than ever before. I reacted BADLY to rebif.

Then I switched to lipitor, i think i can actually notice a very slight reduction in the tingling in my feet (as the tingling in my hands is now gone) within an hour of taking it. Its because of this, i split my 60mg dose into three over the day.

HopefulDoc wrote:Also - can anyone lead me to info on results of human trials. I am going to need SOMETHING on human trials to give my primary physician when I ask her for a RX.
I think you have the links now via Shayk.

I presented my doctor with these kinda print outs of abstracts from formal journals. My GP was the one that prescribed me the statin. I think it was because of his general feeling of being helpless. He has known me for over 10yers, and i met him through a friend, so we see each other outside of the practice. My GP was also probably used to prescribing statins day-in day-out for high cholesterol. He monitors my liver enzyms to ensure he does no damage.

I have personally had relapses while on statins, and my balance is what is one of my worst symptoms of MS, but i am certain it has helped (tingling at the very least). Obviously it helps different people in different ways. I would LOVE my balance back to close to normal.
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.

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Post by carolew » Sat Jul 29, 2006 5:20 am

Hello Hopefuldoc,
I am a physician too and started taking lipitor as soon as I read the article (by Dr. Wassef in California) on how zocor reduced by 40% the number of lesions visible on MRI. I have been on it now since Jan. '04 and people around me noticed that my balance was better within a month.
It is not perfect because I have had one attack while on it but I am sure it was mild because of the lipitor.
I told my gp and my neuro about taking the Lipitor and since they had nothing else to offer, no one told me to stop" Plus, as family physicians, we prescribe alot of it and we prescribe it at 80mg per day (maximum dose) for pts who have just suffered an MI. We do need to check the liver enzymes regularly and I do have mine checked, all is fine.
I get mine through my gp.
Some pts try it and it does little for them but it sure gave me a feeling of being more 'stable'.
All pts are different and one article on this forum said that one needed to have the gene that puts you at risk for heart disease for the lipitor to be effective. It works on the inflammation process that destroys our myelin. If it can help coronary arteries, it seems to also help reduce the damage done by T-cells on our myelin.
So, best of luck with your GP. Remember that lipitor is sold on the shelf in England...So some think it is quite harmless.
Welcome to the forum.
Bye for now, Carole

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Post by bromley » Sat Jul 29, 2006 7:25 am

Remember that lipitor is sold on the shelf in England
This isn't strictly true. You have to buy them from a pharmacy and either have a history of high cholestrol or be 50+ and overweight. A 20 year old man / woman would not be sold them.


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Post by carolew » Sun Jul 30, 2006 6:30 pm

Oops, I understood wrong then.

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