Health Problems

[indy5mike]

Hello,
I was taking Lipitor for about 3 years and I got deathly ill one day. Doctor did blood work and found my CPK to be almost 17,000 (yes thousand). I was immediately admitted to the hospital where I spent a week getting fluid pushed through me. The Lipitor was also immediatly stopped. Had another bout with elevated CPK a week later. That was 3 years ago and since then I have had HORRIBLE muscle problems, I am 6ft 6in and 275 and used to be able to do most anything. It is all I can do now to walk. First doctors thought I had ALS but was ruled out. They have done eveything in the world to me including muscle biopsy but no answer to what is going on. I have always thought Lipitor was the cause but after 6 doctors and a referal to the Mayo Clinic I am no closer to a diagnosis than I was 3 miserable years ago. I am taking Vicodin for the constant pain and am having to get cortisone shots in my leg muscles every 3 months just to keep walking. Has anyone else had this kind of severe problems from Lipitor? My doctors just wont agree it could be the problem. Thanks, Mike

[Ray Holder]

Hi
You have obviously suffered from rhabdomyolysis, a known and medically recognised side effect of statins.

What you need now is to take supplementary Coenzyme Q10 as the depletion of this by the statin is the root cause of the problem, but you have consequent damage to your carnitine supply mechanism, and will need supplementation for that also.

If you find Fran at S.O.S. group owner on this site, her many postings will give you dosage details. If in trouble contact me again

Ray

[indy5mike]

Yes rhabdomyolysis is what the doctor refered to when I was admitted to the hospital. Thanks

[Darrell]

Indy5mike, it sounds to me like you may be one of the unfortunate among us who has had an autoimmune reaction as a part of your statin side effects. [It may be a reaction to some of your body's side effect chemistry, not particularly to the statin itself. Hence your doctors' confusion.]

I think Bunnylady and Harley2ride have similar "whole-body" problems, if I recall correctly. That may be why cortisone helps your legs. Have you ever tried oral prednisone? I think they have. Have a look at their posts.

Like Ray, I'd be willing to bet that Q10 and L-Carnitine would help too. So take a look at Ray's posts and my posts since mid-April 2006 too.

[sos_group_owner]

Hi Mike,

Your doctors don't make any connection between statins and rhabdomyolysis? Rhabdomyolysis is listed right in the drug package insert!

Baycol was taken off the market because at the time, 30 some people died from complication ICW rhabdomyolysis.
Over 100 deaths are now attributed to Baycol & rhabdomyolysis.

Dr Paul Phillips of Scripps Mercy Hosp in San Diego, CA, provides specific info as to how a muscle biopsy should be done when statin associated rhabdomyolysis is suspected. [http://www.impostertrial.com/physician.htm] You might want to print this info and take to your doctors.

Re: CoQ10 - should be in gelcaps with some vitamin E or taken with vit E.
Gel form is more effective than powdered in a capsule.

Start taking 100 mg once daily, and increase as needed. Everyone reacts differently... some need very high doses. My husband takes 300 mg once daily, but at one time took 600 mg to 900 mg daily. An additional benefit is that CoQ10 can also (and usually does) lower BP in those individuals with elevated BP... so if you are taking any BP meds, monitor your BP when starting CoQ10 and when increasing dosage.

L-Carnitine and Acetyl L-Carnitine can also help. I think some on this board take 500 mg two or three times daily. Alpha Lipoic Acid can help the body to benefit more from carnitine. Not sure of the ALA dose.

All of these help with mitochondrial restoration.

Fran

[indy5mike]

Fran,
Thanks for the info. NONE of my Doctors will associate my trouble with the statins. They keep looking for everything else and cant find it. I started taking CoQ10 (150 mg 2x day =300mg)and L-Carnitine 250 mg 2x day = 500mg) on Saturday. I was unsure of a dosage so started here. Should they be more? Is 2x a day best or take 1x day? What kind of time does any obvious improvement usually take (assuming it ever does)? Thank you for your help. Mike

[sos_group_owner]

Hi Mike,

Re: CoQ10 - from Dr Graveline...
"Dosage of CoQ10 depends on the condition. If you are using it with your statin merely to prevent the onset of muscles aches and pains or nerve damage, a dose of 100 to 200mg daily is reasonable. On the other hand, if you already have these problems and have stopped your statin drug and are trying to get back to normal, a daily dose of 500-1000mg might be advisable, especially since Q10 is a very safe, natural substance. It is true also that in selected clinical trials of certain neurological diseases; doses up to 2400mg daily are being studied. As to the best form, try to find Gelcaps and look for economy."
http://www.spacedoc.net/statin_alternatives.htm

Carnitine can act quickly and lasts about 4 hours. Split doses are best (provide the most benefit).

Recovery is a very individual matter. Some respond quickly, others take longer and some don't recover at all. Sorry to be so blunt, but that's just the unpredictable nature of statins. My husband is still experiencing persistent short term memory loss 2+ years after stopping 8 years of statins.

If your current doctors make no connection between statins and your diagnosis of rhabdomyolysis, I think you might need to go 'new doctor shopping'.

Fran

[Cat Mom2]

They are not going to connect your problem with the Lipitor because if they do, then they can't send you for more and more tests and also if they admit it, they also have to admit it was caused by something they gave you to take. I would be finding another doctor!

I would have to ask him/her if he has ever bothered to read the INSERT!

[poohhel]

Luckily I have found a new doctor that has not brushed me off when I told him I suspected statins for a lot of my problems, BUT he is still having me go through multiple test to determine what damage has been created.

My MD suspects atherosclerosis or PAD and my neurologists suspects a pinched nerve.... oh my. I was hoping the "statin alternative" supplements along with Acetyl L carnitine would kick in soon enough to avoid some of these test. But I guess I still do need to find out if any severe muscle damage has been done since it is pretty much my whole body that is being affected in 1 or more ways... from headaches to burning, swollen feet...not a spot on my body is pain free.

[Biologist]

Fran,

You write:

"My husband is still experiencing
persistent short term memory loss
2+ years after stopping 8 years of
statins.
--Fran

Has your husband tried Vinpocetine?

How long has he been taking Acetyl-L-Carnitine?

Thanks.

Biologist

[bunnylady]

This is Bunnylady- yes I've on 20 mg of prednisone- since October of 2006- it has given me my life back but have side effects from the prednisone- I can live with these- swollen face, bruising- I actually can walk now and exercise a tad and have lost 20 lbs- I am having knee replacement surgury in June because the Lipitor ravaged my all ready arthritic knees- I have to wean myself off the prednisone- as I do I grow more lethargic and have worse headaches- I want to see how I feel after both drugs are out of my system-

Good luck and go see a rhuematologist if you feel you need the help of prednisone for a while- take the supplements every day also!