Muscle Biopsy

[sheltie57]

I had a muscle biopsy a month ago and I'm still waiting for the results. My medical history is so much like many others here that I would likely bore you with the details. My muscle weakness/pain started around 2000 and has progressively gotten worse. I've been through so many tests and still nothing has been diagnosed. The last doctor I was sent to was a cardiologist and the first thing he said was that I should go off the Lipitor although he seemed to reconsider once he looked at my blood tests and they seemed normal.

My question is: If the muscle biopsy shows some damage, will any of it be reversed if I discontinue the Lipitor?

I only started to research about Lipitor after seeing the cardiologist. He really made me start to question this drug. The muscle biopsy was ordered by the neurologist that I've been seeing.

[woody]

I think I recognised that my muscle problems were due to Lipitor early on, so I decided to stop taking it. and as a result, my pain has been easier to deal with than a lot of other people.

All I can say is that I will never take another statin again.

The Q10 and Acetyl-L-Caritine that I take seem to have stopped the pain. I have not had any pain now for approx 7 weeks.

Hope this helps.

Regards.

Woody.

[Darrell]

"If the muscle biopsy shows some damage, will any of it be reversed if I discontinue the Lipitor?"
Reversed? I'd say the better question is: "Will the muscle damage get worse if I keep taking Lipitor?" And I'd say that the answer lies in your statement: "My muscle weakness/pain started around 2000 and has progressively gotten worse."

[Ray Holder]

Sheltie
I had quite bad wastage from zocor on the Quadriceps muscle at the top of my leg. This was already half gone from polio 50 years ago, but it came down to a cord about the diameter of my little finger on the top of the leg, i.e. about 1/4 of its previous size.
The Q10 did not make a great difference to my CK reading, but carnitine made it fall right back, and over a period the muscle grew back to near its pre-zocor size, so I think there is hope, with a bit of help from carnitine.

[Ray Holder]

I forgot to mention that it won't improve until you stop the statin.

I read a big article in a national paper today about a lady with mental problems from a statin, and the stand-in for her doctor was no less than Dr Malcolm Kendrick, so the article had a good start, then Uffe Ravenskov had a few words, and two professors of the same mind were mentioned. It seems that UK doctors are starting to realise that there are many downsides to statins, It said that it was thought only 1 in 1000 bad side effects get reported up the line.

[sheltie57]

[quote="Ray Holder"]I forgot to mention that it won't improve until you stop the statin.[/quote]

I did stop taking the Lipitor 2 days ago. I have a doctor's appointment on Tuesday so I've been trying to find some reputable data to take along with me so that she will not freak out that I've gone off this drug. Do you know of any good articles that would support this?

Also, I am taking Q10 and Omega 3-6-9. What is carnitine? And where do I get it?

[woody]

groups.yahoo.com/group/Stopped_Our_Statins

This link is a brilliant support group that I highly recommend you join.
You should find any information you need there.

[Darrell]

"Carnitine" is L-Carnitine or you may find it as Acetyl L-Carnitine HCl. You can search this site and find out about it, especially by starting with Ray Holder's or my posts starting in late April 2006. It helps some of us avoid daily muscle pain. It is a dietary supplement, not a pain killer, and is important in muscle metabolism. You can get it in most places where vitamins and supplements are sold.

[Ray Holder]

My paper of my experiennces and research may help, see www.spacedoc.net/r_holder.html

[bunnylady]

Drug Stores and Wal Mart, Target did not carry L Carnitine- and I wanted high does- GNC is way too expensive

so I found it one line my using Google- get it shipped faster the better

it does work

6 weeks off statins and 5 weeks on the supplements and doing much better

[Darrell]

I'm pretty sure I got some at Wal Mart, but if so it was one of the new super-size stores. I definitely got my first batch of L-Carnitine at my grocery store. But now I order on-line to get much bigger bottles (300 capsules) at somewhat lower unit prices. That, and it's a sure thing -- some of the local stores only carry a few bottles of each item and run out for a few days at a time. I don't want to ever run out.

[sheltie57]

I feel like such an idiot. For over 6 years I have lived a life where I've had to adjust everything I did because of my fatigue and pain. I feel angry and cheated from doing the things that I used to do.

Thanks so much to all of you that replied to my post. I can only hope and pray that it is not too late to reverse some of the damage to my muscles. I will join the yahoo group that was suggested. At least it is comforting to know that there are others that have been through this and that I'm not just imagining the muscle problems.

I've been in contact with a professor at the local university who has been loudly protesting the use of statin drugs. He has passed my email address on to another person who knows alot about this and who can provide me with some good research material. I'm looking for something that I can take to my doctors that they will consider to be reputable. I will share whatever I find here with all of you.

Thanks again!

[eml256]

you could google (or use "scholar google", which is a great search engine for medically related articles/studies) for studies/articles by 2 researchers from Canada: steven K. Baker and Mark Tarnopolsky--look for their article re: statins and musle
one of the articles is titled "statin myopathies: pathophysiological and clinical perspectives".
the abstract for the article is archived on the site. though much of the info is technical, your doctor should be able to understand it.
You may wish to also google info on "mitochondrial cytopathy" or mitochondrial dysfunction"--perhaps the info under tiese headings will assist you in convincing your doc that statins may well be involved in your case. best of luck, madelyn

[sheltie57]

Thanks for all of the info. I was at my doctor's today and she agreed that I could go off of the Lipitor for 2 or 3 months. I'm to go back for a blood test in 2 months to see if my cholesterol has gone up. She also said that if my cholesterol were to go very high there is another drug that can be used that does not work like the statin drugs. Is anyone familiar with it?

I stopped at the neurologist's office after visiting my regular doctor to find out if my biopsy results had come in yet. After all, it had been almost 2 months. Their offices are right beside each other. Surprise, my results had just come in this morning, but the neurologist had not looked at them yet. The receptionist read through the report quickly but wasn't sure exactly what the results were since she hadn't seen very many biopsy results. She did refer to some kind of droplets in the muscle. Don't know what that means. And that she was sure the neurologist would want to see me. I'm keeping my fingers crossed that this test is negative. I feel that way I will have some hope that maybe my muscle weakness/pain can be reversed.

[Darrell]

"does not work like the statin drugs"

It could be Zetia: My doctor tried Zetia on me after my statin damage and everything flared up again quickly (overwhelming fatigue, leg pain and weakness, etc.). The patient prescribing information sheet was revised to add muscle problem warnings right after I started taking it.

Or it could be WelChol. That was my third and final try: It involves swallowing six very large pills a day and for me it involved uncomfortable gastrointestinal feelings and constipation. I didn't refill that one either. If my cholesterol had been running higher I might have stuck with it longer.

I'm now convinced that I may need more cholesterol than other people. Lowering mine with Zetia caused problems, and Zetia is not a statin and should not have affected my Q10 production. I didn't stick with Welchol long enough to see if it would cause fatigue, muscle problems, etc.

[Ray Holder]

These other drugs which have other names over here are well known for their unpleasant side effects.
I have now decided to forget all about cholesterol, and have gone back to butter and cheese and normal food, but to avoid any problem from homocysteine and similar problems I am keeping a careful watch on my blood pressure, avoiding stress, and taking a combination tablet from Jarrow Formulas USA which has the three main vitamins plus trimethylglycene?? to give a bit of confidence, only 20 pence per day, I won't try to convert to cents, but it can't be many.

[sos_group_owner]

Re: I am keeping a careful watch on my blood pressure, avoiding stress, and taking a combination tablet from Jarrow Formulas USA which has the three main vitamins plus trimethylglycene??

Hi Ray,

Jarrows products are high quality. Another excellent multi is TwinLab - Daily One Caps without Iron. Majority of adults do not need iron supplements (in fact too much iron causes a whole host of health problems), but if you do have a medical condition that requires TwinLab has the same formula with Iron. Daily One Caps do not contain TMG.

Trimethylglycine (aka TMG - biochemical term for betaine) also helps to control homocysteine. A very good article that explains how our body deals with homocysteine (Hcy) is written by Dr Deb Baker-Racine:
ww.y2khealthanddetox.com/truthchol.html

My husband takes 1,000 mg of TMG daily in addition to several other nutritional supplements. His Hcy is around 5 or less. There is no safe level of Hcy, but optimal levels are 6.2 or less. For every 3 points above 6.3, there is a 35% increased risk of heart attack and/or stroke.

Dr Deb discusses that some need more than the B vitamins to control Hcy. She does sell her own line of vitamins (and I'm not endorsing her products); she just writes a very comprehensive article. At the bottom of the page Dr Deb also recommends four books you should recognize: Lipitor - Thief of Memory (Dr Graveline 1st statin book), Cholesterol Myths (Dr Uffe Ravnskov), Heart Revolution (Dr Kilmer McCully) and Know Your Fats by Dr Mary Enig.

Hope you find this info useful.

Fran

[sheltie57]

I tried to buy L-Carnitine on the weekend. Seems that Health Canada has pulled it off of the store shelves. And it sure is hard to find CoE Q10 in gel caps. Walmart has 100mg pills for the most reasonable price. The health food stores wanted about $40 for the same thing.

Oh...and I got a call from the neurologist's office yesterday about the muscle biopsy results. He wanted to see me today but I didn't have transportation into the city until Thursday. I was really hoping that this test would be negative. I figured then I would at least have some chance of recovery from this muscle problem. But if there is some damage, then I'm afraid I will never get better.

Yet, I'm so encouraged that I found this web site! I would never have thought of going off of the Lipitor if I didn't stumble here. I finally was able to find out when I started taking Lipitor and when my symptoms first started. I started Lipitor in Jan. 1999 and by Jan 2001, I started with the leg swelling and the heaviness in my legs. I used to walk all over our town 3 or 4 times a week and every day to work. Now, I'm lucky if I can make it to the end of my driveway. I've been to many doctors for tests. All came back negative. I've felt like no one believes me and that I must be imagining my problems since there was no diagnosis. I've only been off Lipitor for about a week, but there is no way I'll ever go back on it. I'll take my chances with the heart disease instead.

[harley2ride]

You might want to talk to the pharmasist at walmart. I've been getting my Gel-Cap CoQ10 in 300mg dose for quite a while now from walmart. They are much cheaper there then anywhere else for me. Sometimes they even have the l-carnatine in 300mg dose.

[sos_group_owner]

When we were visiting Canada 4 summers ago, we could not find doses of
CoQ10 any higher than 50 mg at Walmart or Pharmacies. "sheltie57"
might have to order higher doses over the internet:
ConsumerLab.com recommends these vendors...
* VitaminLife.com
* Puritan's Pride
* papanature.com (newly opened division of iHerb.com)
Consumer Lab tests the quality of nutritional supplements.
Some of their info is free.
[/url]http://www.consumerlab.com/products.asp[url]

Fran