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
New to Lipitor - So glad I found this chat board!
- HopefulDoc
- Newbie
- Posts: 7
- Joined: Thu Jul 27, 2006 2:00 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
Again, welcome. Here's hoping the lipitor and LDN work for you.
Sharon
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
Are Statins a Treatment Option for MSNumber and volume of Gd-enhancing lesions declined by 44%, (p<0.0001) and 41% (p=0.0018), respectively. Treatment was well tolerated.
Putative Actions of Statins in MS—Comparison to Interferon Beta and Glatiramer AcetateStatins 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.
Maybe this helps a little bit. I know there are others much more knowledgeable on the topic who will eventually chime in.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.
Again, welcome. Here's hoping the lipitor and LDN work for you.
Sharon
- CureOrBust
- Family Elder
- Posts: 3374
- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
Re: New to Lipitor - So glad I found this chat board!
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.HopefulDoc wrote:Can any one out there tell me how long it took to start seeing improvemements in your case.
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.
I think you have the links now via Shayk.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 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.
3 CCSVI treatments, no major noteable benefits thus far.
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
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
-
- Similar Topics
- Replies
- Views
- Last post