Muscle wastage from statin use

[Ray Holder]

I took Zocor for 4 years and experienced severe muscle wastage and heart weakness. I stopped taking it as my CK was elevated, but things continued to worsen over the next 14 months, until I heard the reason for my problems.
I had polio in 1951 and had some muscle loss in my leg and trunk muscles. The Polio Network of W Australia pointed out the need for Q10 and they also use and advocate the use of L Carnitine for muscle deterioration.
I started Q10 and in a few days my heart improved greatly and subsequent addition of carnitine restored my muscles to near pre statin size, CK reduced to a more normal level.
After studying the properties of Q10, I proposed that post polio muscle loss and statin induced loss were one and the same, the former being caused by reduced body supplies of Q10 with advancing age, and the other by statin side effect.

Whether my muscle problems were primarily due to statins or PPS I have no way of knowing, Polio societies warn post polios against statin use because of bad effects, strengthening the argument that the cause of both is the same.
Carnitine is readily available from health food stores, used as a powder taken in water, Starting with 250 mg daily and working up slowly to bowel tolerance as required, I take 6gm a day at present, plus 500mg of Q10.

Carnitine is needed to accompany fatty acid fuel to cross the membrane into the mitochondria where they are used to produce muscle energy, without it the muscle goes into starvation mode and wastes away.
I have written a paper detailing the mechanism, but so far have not been able to get it to a wider audience.

Ray Holder

[spacedoc]

Ray, very helpful post re muscle wastage , post polio syndrome and statin use. I would like very much to see your paper re mechanisms. We have many case reports of statin associated muscle wastage. atrophy, shrinkage, etc with slow response to just CoQ10. Some of these are post polio. Addition of carnitine makes a great deal of sense. I want to research this a bit and pass it on to others. Duane

My e-mail address is: *spacedoc@cfl.rr.com

[mousa]

Dear Ray,

Thank you for your very interesting post.

I was on Lipitor off and on for quite a few years. Would stop it when my feet got so sore I could hardly walk. But doctors said that complaint had nothing to do with Lipitor but didn't offer any advice and said Lipitor absolutely essential.

I have atrophy of hands and buttock and often had attacks of heart palpitations. I also have electric shock like sensations into head, arms and trunk. In 2004 Neurologist diagnosed CIDP variant (Chronic InflammatoryDemyelinating Polyneuropathy) changed recently to RLS (Restless Leg Syndrome) affecting not the legs but trunk and arms.

I stopped Lipitor in December 2005 and I think some small improvement in muscle atrophy, palpitations are greatly reduced and electric shock sensations,which were very bothersome, are also much, much better.

Will look forward to seeing your paper and Spacedoc's comments.

Since stopping Lipitor and finding this forum I am taking CoQ10 174 mgs daily. Will now think about adding L-Carnitine.

Best regards,

[carbuffmom]

Hi mousa:

I had been taking statins for over 13 years. After a switch to Vytorin about a year and a half ago, I also began to get weak hands with some muscle atrophy between the thumb and index finger. My right arm is also weak. I was sent to a neurologist for an EMG and nerve velocity test. After the test I had the electrical shocks that you are experiencing. They were so bad that I couldn't even sleep. I still have them although they are not as bad. The neuro thinks I have ALS. My symptoms have not gotten worse since I stopped the vytorin which I hope is a good sign. I do take CoQ10 (500 mg) three times a day and various other supplements.
I too, was diagnosed with Restless Leg Syndrome by my family doctor before the EMG. I may have exacerbated the EMG results by running 4 miles prior to the test. (I thought he would only do my hands---that I had carpal tunnel) I wish you luck. I think statins caused my problems. Deb

[GWardMD11]

CarBuffMom (Deb)... my wife had many of the symptoms your describing. This is quite a long story, but now she doesn't have any (by accident). Can I ask you what your and your spouse's occupation was in the past 15 years? This is not a survey, but a real potential solution based on your answer.

[carbuffmom]

For the past fifteen years, I have been a homemaker, a bookkeeper, a bank teller and a fitness tech at a ladies' gym. My husband runs an auto dealership and we have a Whitetail Deer Ranch/Farm as a hobby. Hope this helps. Thanks, Deb

[Charles Wilson]

Ray,
I am interested in the carnitine source you mentioned in Australia. I was taking 250mg twice a day and really didn't notice a "big" difference. It may well be a very subtle chance that is hard to detect. John Senneff's book "Nutrients for Neuropathy" touches on Acetyl-L-Carnitine and Alpha-lipoic Acid as being quite helpful. In any event, I am always looking for a better price for supplements and hopefully not sacrificing quality. I do know there is a big difference in the quality of Q-10.

I believe the key to all of this is nerve regeneration. Once we get our nerves back on track, the rest will fall in place. Seems simple enough, but everything I read indicates nerve regeneration is a sloooow process.

[Ray Holder]

Charles
Please see my posting to harley2ride yesterday, carnitine has to be in sufficient quantity to have much effect. I am now taking about 6 grams a day, in powder form, which seems readily available as cyclists and sportsmen generally hope to get extra energy release from it. About 7/8 years ago, the makers cut out the final grinding process which turned it from a fine powder like table salt into a fluffy powder like icing sugar, and it is now less effective and more is needed for the same effect.
I get mine from the Polio Network of West Australia who have it ground down for them specially, but as they are a Post Polio Charity, I am not sure if they would want to increase their operations in other directions, you could ask them. Their website is www-upnaway.com.au/poliowa and has a lot of practical info about carnitine.
A CK blood test revealed a figure of about twice normal for me, which came down to a normal 200 with carnitine, showing both the need for and effect of carnitine. I think the medics only regard only 3 times normal as needing treatment, but I had serious wastage at only 2 times.
Try increasing your carrnitine first of all, I got results with local material at first, do it over several days, excess over requirements will make bowels loose, and the normal dose would just a little below that amount
Should like to know how you get on
Ray

[Eve Vorgity]

Ray,
I just joined the forum today,and have been on my comp. all evening, then I found you and the comments you have posted has given me hope for all the muscle pain that I have in my arms. I am going to follow your advice on the Carnitine and COQ-10, now I have hope that I will be able to hold my 8mo. grandchild without fear of dropping him

Eve.

[Darrell]

I've actually tried both of these in recent weeks. I can't say that I detect any difference between the Acetyl-L-Carnitine or the plain L-Carnitine -- they both work for me. Adding the Alpha-lipoic Acid for couple of weeks had no obvious effect.

[Wings42]

Thanks Ray.

I've read your supplement advice on other sites and am following it. With the supplements and PT, my muscles are slowly and painfully rebuilding. It's gratifying to see what was once a hollow in my buttocks near the upper sacrum now full and round. But the process is oh so painful! Any exercise puts be in bed for a couple of hours. Is that your experience?

David
San Diego

[Allen1]

Hi there David,

I'm sorry to see that you are another statin victim who have found out what can happen after it already has. Ray is no longer with us but he was a hell of a good guy when he was :-

http://www.spacedoc.net/board/viewtopic.php?t=1744

I stopped posting here a while ago mainly due to having to see a veggie only fanatic spouting off a load of basically harmful propaganda which would in reality make victims of statins a lot worse health wise in a short period of time.

There are a lot of good posts to be found here, not everything will suite some people as in which supplements to take, it really is mainly finding out which ones suit you and a bit of trial and error plus a good healthy diet that includes animal products as well as vegetables.

I hope you continue to improve, it does seem to take a long time for many of us and sometimes we don't get back to normal, for the majority though it does get a bit better over time.

As I mentioned, Ray was a great guy and I only replied to your post because you thought you were talking to him and wouldn't have got a reply. I do hope some of the old posters come back to offer some sound advice but I think that I will be keeping my distance for now.

All the best,
Allen.

[Wings42]

Thanks Allan. I've been active on other forums in the past. People in pain can be quite emotional about things, so I've learned to do as you recommend, to pick and choose and avoid getting in arguments. Sometimes that's easier said than done if somebody takes what you post personally.

David
San Diego