prescribing statins for MS

[billf]

Does anyone know of a Neuro (or other Doc) in Colorado who has prescribed, or will prescribe, statins for someone who does NOT have high cholesterol, but who does have MS?

[ewizabeth]

Bill,

That's a good question. I asked my cardiologist a few years ago. My cholesterol was in the 170s at the time. He adamantly refused to give them to me.

Now my cholesterol is 190-some, but he says my total numbers and averages are ideal. My neuro says the same thing.

Are these people who are getting the statins for MS only the ones with the high cholesterol?

[CureOrBust]

Are these people who are getting the statins for MS only the ones with the high cholesterol?

No, I take Lipitor and had fairly low cholesterol readings before I started. My GP had nothing else to offer, and saw them as a fairly low risk, escpecially when compared to crab's. I also presented him with the early positive studies, and have regular liver/blood checks.

I would guess that a lot of people on Statins have an understanding and open minded doctor.

[ewizabeth]

Cure,

Do they seem to be helping? I'm glad you were able to get them. Are you taking a high dose? I think I read somewhere that the suggested dose for MS patients was pretty high, around 80 mg per day.

Now I'm starting in a new trial (for Tovaxin), so I know they're out of the question for me right now, but it will be good if others can get them.

My neuro said there are trials for them near Chicago, but he isn't taking part. He said there were too many tests and record-keeping requirements for this particular trial, and he has a small office staff. It would be too much for them to keep up with the details.

[CureOrBust]

Do they seem to be helping?

I *think* they are helping a lot. When I first tried Lipitor, I noticed a reduction in the tingling in my feet within an hour of taking the dose. I was previously on Simvastatin (80mg) and although the tingling in my hands cleared up in about 3 weeks, I didnt notice the immediate effect. I dont think it was placebo, as I was actually very concerned about switching to lipitor; ie I wasnt expecting it to work.

Are you taking a high dose? I think I read somewhere that the suggested dose for MS patients was pretty high, around 80 mg per day.

I have a script for 80mg Lipitor, but dont notice the difference between 60 and 80mg, so I break the pill up and take about 60mg/day in a divided dose.

Now I'm starting in a new trial (for Tovaxin), so I know they're out of the question for me right now, ...

From what I understand, they are allowed while on the trial. Although if you weren't taking them before, and they work for you, it would make it hard to distinguish which is working.

My neuro said there are trials for them near Chicago, but he isn't taking part. He said there were too many tests and record-keeping requirements for this particular trial, and he has a small office staff. It would be too much for them to keep up with the details.

Thats all well and good, but I hope he isnt using this as a reason to not prescribe and allow personal trials. I think you said that you previously asked your cardioligist for a script, not your neuro or GP.

[ewizabeth]

Thats all well and good, but I hope he isnt using this as a reason to not prescribe and allow personal trials. I think you said that you previously asked your cardioligist for a script, not your neuro or GP.

I think he would prescribe it if I requested it. For now it's a moot point because of the Tovaxin trial, but if for some reason they can't make the MRTC's from my blood, I might have this as an option. I really don't want to go back on shots again.

It's good that you can get it, and it seems to be helping.

[carolew]

I started at 10mg of Lipitor and gradually increased up to 80 mg. Now, I am on the FTY720 trial so I take only 20 mg. My enzymes are checked regularly and no problems even on the large (maximum) dose, good luck. Carole