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Posted: Wed Jun 28, 2006 4:36 am
by CureOrBust
I have been doing some thinking, and I note that the best response was when I first started simvastatin (well really when i stopped rebif), and then again when I switched to lipitor.

I am thinking I might try a switch back to zucor. It just might be that the body some how gets used to the drug, and compensates for it. The switch may bring about extra benefits.

I remember carolew i think, who said she trys to take less daily, so she can increase it when she feels she needs it. Which could work along the lines of my crazy idea.

At this stage its a very loose idea, but i am not one who is afraid to use my body as a test tube.

Statin Use

Posted: Wed Jun 28, 2006 8:31 am
by sunnydelilah
Don't want to use your bod for a test tube? The disease is doing just that. I found the higher the dose, the better the results. I have used them for four years now with outstanding results. I am in remission now after ten years of misery. I got my life back, my balance and strengh in my legs. You might want to consider what progress you are making before you shy off of the statins. They work.

Posted: Wed Jun 28, 2006 9:11 am
by bromley
Sunny,

Thanks for this. The real mystery of this disease is why some do well on some therapies and others on other therapies (and some not at all).

It may well point to different diseases, or sub-types. When I mentioned statins to my neuro he said "cause muscle damage". I think I'd prefer that to brain damage!

Ian

statins

Posted: Wed Jun 28, 2006 11:32 am
by sunnydelilah
You already have some brain damage if you have had MS over ten years according to the 'experts'. Brain atrophy occurs over time. If you think the statins increase your risk, you should read what the recognized therapies will do for you. What treatments one selects has to be balanced with the side effects. I luckily have none with the statins. Not so with the interferons. Tysybri (sp) can kill as it did in the trials, but it still got accepted by the FDA, even as a front line treatment. I am not advocating everyone use statins, but they do work and work well.

Posted: Wed Jun 28, 2006 2:08 pm
by carolew
I had read on a thread here somewhere that statins work for people who have the gene that causes heart disease. So, it works for the heart and for the ms. Funny how in the heart they call it atherosclerosis and our disease is called multiple sclerosis... :? I am back at 80 mg of Lipitor because I have some special occasions coming up and , as usual, there is always some improvement. Hope it works for you too. Carole

Re: Statin Use

Posted: Thu Jun 29, 2006 1:46 am
by CureOrBust
sunnydelilah wrote:I found the higher the dose, the better the results.
I am already near the "max" dose. I went down from 80 to 60, and didnt notice any difference really. But i do go back up to 80 when i have a relapse.

I do personally think that splitting my dose over the day in 3, works better for me.
sunnydelilah wrote:You might want to consider what progress you are making before you shy off of the statins
I agree with you, i am not talking about stopping, but trying switching back to zucor, from lipitor. Originally i was on zucor.

statins

Posted: Thu Jun 29, 2006 5:10 pm
by sunnydelilah
I use Zocor as Lipitor is considered much stronger. I am saving that one if Zocor would ever seem to be failing. It isn't, so I won't be switching any time soon. I really like what it has done toward improving my life. I got back to normal, with the exception of some nerve damage, but it really feels like it went away. Hopefully, I will not become a fool, but it really feels like it is under control.

Posted: Tue Jul 04, 2006 4:07 am
by CureOrBust
I am now on my 4th day of being back on 80mg Zucor. After tomorrow, i will switch back to lipitor.

I havnt noticed that I have gone down-hill, and quite possibly, i have noticed an improvement, But I am currently recovering from a relapse, so its hard to tell whats what.

I did find an interesting PDF that has the following:
The isolated cells were stimulated by a mitogen in the presence of a statin (lovastatin, simvastatin, or mevastatin), interferon B-1b (chosen for study as an established immunomodulatory MS therapy), or a statin plus the interferon. Individually, each drug inhibited the proliferation of activated T cells, although to different degrees. (Among statins, the lipophilic drug simvastatin was the most potent.) For a statin plus interferon B-1b, the drug effects were additive.
my emhasis, and i note atorvastatin (ie lipitor) wasnt mentioned as trialed

The pdf has various explanations on how statins work from research. Most above my understanding, But can be found at http://www.neura.net/images/pdf/Winter06Statins.pdf

statins

Posted: Fri Jul 07, 2006 6:13 pm
by sunnydelilah
My doctor said it was strongest (Lipitor). The article on the mice stated that too.

Posted: Fri Jul 07, 2006 11:31 pm
by CureOrBust
I have done my 5 days back on zucor, and now have gone back to my lipitor.

I think I have noticed that the tingling in my feet has faded, but not completely subsided. But i have also added another suppliment, and am recovering from a relapse, so as I said before, i cant say for sure, whats because of what.

Re: Statin Use

Posted: Fri Jul 28, 2006 10:30 am
by HopefulDoc
sunnydelilah wrote:Don't want to use your bod for a test tube? The disease is doing just that. I found the higher the dose, the better the results. I have used them for four years now with outstanding results. I am in remission now after ten years of misery. I got my life back, my balance and strengh in my legs. You might want to consider what progress you are making before you shy off of the statins. They work.
Your testimony is so encouraging. Last my neurologist told me, I had secondary progressive. DId you still have relapsing remitting or SP after 10 years? Started taking lipitor a few days ago and I am PRAYING for some results. Can use ANY words of encouragement you have to offer. Thanks a million!

Recovery

Posted: Fri Jul 28, 2006 8:14 pm
by sunnydelilah
I got better very slowly, but noticably. It has been four years now and I wished I had started them about six years earlier to avoid the misery I endured. It is a lot more fun to going uphill than down. Hopefully, it will work for you. I am not sure they work for everyone, but it is worth a run. I don't know if statins work with progressive, but mine sure felt that way and went on pretty heavy for six years before I started the statins. I did high dose steroids every quarter for a year without much benefit at one point. On top of all this, I have great cholesterol scores. Don't give up because there are considerable more treatments than when I was diagnosed twenty years ago.

Re: Recovery

Posted: Tue Aug 01, 2006 9:21 am
by HopefulDoc
sunnydelilah wrote:I got better very slowly, but noticably. It has been four years now and I wished I had started them about six years earlier to avoid the misery I endured. It is a lot more fun to going uphill than down. Hopefully, it will work for you. I am not sure they work for everyone, but it is worth a run. I don't know if statins work with progressive, but mine sure felt that way and went on pretty heavy for six years before I started the statins. I did high dose steroids every quarter for a year without much benefit at one point. On top of all this, I have great cholesterol scores. Don't give up because there are considerable more treatments than when I was diagnosed twenty years ago.
Thanks for the response. My girl friend said it took her about 3 months to notice a difference. I guess I am just anxious because their is so much I want to do. I want my life back. HUGH. I wonder what makes this work for some and not others. I am losing faith in available treatments. I did the ABS's and solumedrol. Stopped casue of the side effects. Ever hear of using goat serum? Alan Osmond (of the osmonds) supposedly is using it with great results. It costs almost as much as the ABC's though and no Rx coverage of course.

Re: Recovery

Posted: Tue Aug 01, 2006 9:23 am
by HopefulDoc
sunnydelilah wrote:I got better very slowly, but noticably. It has been four years now and I wished I had started them about six years earlier to avoid the misery I endured. It is a lot more fun to going uphill than down. Hopefully, it will work for you. I am not sure they work for everyone, but it is worth a run. I don't know if statins work with progressive, but mine sure felt that way and went on pretty heavy for six years before I started the statins. I did high dose steroids every quarter for a year without much benefit at one point. On top of all this, I have great cholesterol scores. Don't give up because there are considerable more treatments than when I was diagnosed twenty years ago.
PS 20 years ago you got your diagnosis - so does that mean you were relatively OK for the first 10 years? I was OK for 3 and then it started to progress like crazy.

Re: Recovery

Posted: Wed Aug 02, 2006 2:14 am
by CureOrBust
HopefulDoc wrote:Ever hear of using goat serum?
Look into the forum here called Aimspro. This is the name the goat serum goes by.

Some people here (including myself) have tried it.