Neuropathy Continues after Discontinue of Statin

[BOBANNON]

:( Hi Folks,

I am just 35 and was on Lipitor 80mg and Zetia 10mg due to high tri-glycerides. I was only on lipitor for 8 months and zetia for about three. I too have now developed or rather discovered the problem / symptoms. Aching musles, relentless pain in my upper legs. The inability to kneel and get back up easily. Constantly short of breath. Sleep apnia is much worse. Constantly having the urge to urinate, usually at night. And several others. The Doc did a CK test and the numbers were too high, and I am supposed to retest in a week.

Any advice? Should I go and talk with the doctor in person. So far he has avoided any direct contact and I have been talking with nurses. I have good insurance and would like him to order all potentially helpful tests.

It all came on slowly over 8 months and I attributeded alot of it to over activity, being over weight, and allergy problems until the leg pain came on over a weeks time or so.

Previously I had a drug interaction reaction problem with anti-biotics and buspirone which caused me to be 10 times as allergic to things that had never bothered me before. Could that be linked to a genetic predisposition as well?

Is there anyone out there that has found a doctor willing to do the research and tests for genetic traits or pre-dispositions to mitichondrial myopathy?

Any and all advice appreciated. I have read some horror stories and am hopeful that I can get through this without completely debilitating results.

May god bless us all!

[Ray Holder]

Dear Bobannon
Sorry to hear of yet another victim of muscle problems from statins. Please see under Muscle Pain and Statins, the posts from and to Darrell and the relief he has got from taking L Carnitine for this problem.
The first thing to do is to cut out, or right down on, the statin. Merck has patents from 1990 on the reduction of coenzyme Q10 caused by statins, needing supplementation to overcome this deficiency, so take some Q10 for a start. At your age, the use of a very small statin dose might be helpful, not for the effect on cholesterol, but for the "side" effect of preventing inflammation on the inner surface of the arteries.
The Q10 deficiency causes a reduction in one's ability to produce Carnitine, without which the fat fuel, needed by some muscles, cannot get into the mitochondria where it is converted into energy. The muscle then feeds on its protein to make energy, and muscle wastage occurs, also pain, as the carnitine is not there to take the waste products away.
My CK level was only just twice normal, but I had severe leg and trunk muscle wastage over about 4 years. Much came back in the early part of the last 3 years when I have been taking Q10 and Lcarnitine.
There several other bits of information in that same section of the forum.
You will be lucky to find a doctor who knows these things, mine was supportive after I found the cure, but the drug companies put out so much propaganda to maintain their billions in statin sales, that it is brave man who will swim against the tide.

[Darrell]

Bobannon, you need a new doctor relationship for starters. Problems such as yours are not routine and should not be handled exclusively through intermediaries.

I have had great relief from leg problems such as you have described by using Q10 and L-Carnitine. It's relief though, not a cure. Both are available at grocery, drug, and discount department stores. 500mg of L-Carnitine gets me amazing relief for three to four hours of activity. I found significant relief the first time I took 250mg of it, so it's not like a long-term experiment. Check out all of Ray's postings on the subject.

If you want to try something less systemic, I found that a thigh-high medical grade support / compression stocking (15-20mmHg) worn all day would relieve some of the leg ache. But I haven't worn one since the day I started L-Carnitine.

[sos_group_owner]

Hi BOBANNON,

80mg of Lipitor is lethal. Doctors think if "some" is good, "more" must be better. Wrong assumption when it pertains to statins.

Elevated triglycerides are primarily due to a high carb diet and sugar is the worst offender. Here's the drill most doctors subscribe to: BP meds, statins (and many are adding a non-statin, like Zetia, just to make sure), and the famous "low fat - low cholesterol" diet. Sound familiar???

My husband (and I) thought sorbet was a better choice than ice cream because sorbet is no fat. Sorbet is pure sugar and caused his triglycerides to soar to 600.

OK, back to elevated triglycerides and what to do about them, naturally. For starters try to eliminate or seriously limit "white sugar sources" and most of the "white" foods from your diet: flour, bread, rice, potato, pasta. Replace with whole grains. Example: Sweet potatoes and brown rice are better choices than white potatoes and rice. Available now are breads that are made from sprouted grains and contain no flour - they are very good and satisfying. If you can't find them in the deli section, they are usually in the freezer section or available at your health food store. There also make sprouted grains bagels.

Are you familiar with the Glycemic Index? Foods are listed by the Glycemic Index and Glycemic Load. This link explains anything you'd ever want to know about GI - GL foods. It's all about how our body responds to carbohydrates, blood sugar levels and insulin response.
lpi.oregonstate.edu/infocenter/foods/grains/gigl.html
In the left column you can select Foods and by category.

"Low Fat - Low Cholesterol" Diet: Absolute bunk - it's what's keeping us all sick. When we eat this way we invaribly consume a high carb diet and that's what causes high trig's. AND we need fat. AND saturated fat is NOT bad. Best fats are butter, coconut oil and extra virgin olive oil.

Totally avoid anything that contains transfats, hydrogenated fats or partially hydrogenated fats.

"The Skinny on Fats" by Mary Enig, PhD is one of the best fat articles:
ww.westonaprice.org/knowyourfats/skinny.html

Cinnamon - plain old spice rack cinnamon (C. cassia) also helps to lower triglycerides and controls blood sugar levels. Great for diabetics too.

And as Dr Graveline would say, "Take as much CoQ10 as you can afford." CoQ10 should be in liquid form (not powdered) - gelcaps that contain some vitamin E or take with vitamin E to metabolize properly.

In addition to CoQ10, take all of Dr Graveline's "Statin Alternatives":

1) buffered aspirin - 81 mg
2) CoQ10 - 100 to 150 mg
3) folic acid - 400-800 mcg
B6 - 80-100mg
B12 - 200-250mcg
4) Omega 3 (fish oil or cod liver oil) [ There is no upper limit.]

These four items/categories have the same anti-inflammatory affect as 20 mg's of Lipitor, without side effects. Together Statin Alternatives are a potent anti-oxidant, they reduce platelet stickiness and control (toxic) homocysteine levels. Also keep in mind they are not designed to lower cholesterol, because cholesterol is NOT the problem.

Statin Alternatives article:
http://www.spacedoc.net/statin_alternatives.htm

Fran

[harley2ride]

Well, finally got the results of my biopsy from Salt Lake University Hospital. In a previous post I told you about how the doctor down there was doubtful of this being statin related, and doubted the findings of Dr. Phillips from Scripps Memorial, San Diego. Doctor is Salt Lake is now a believer. He found myopathic abnormalities, mitrocondrial abnormalities, something about a missing cell structure, and difference in fiber sizes. He also said that my muscles seemed to show damage from steroid use, yet I've never taken steroids, except for 3 days trying prednazone to see if it would help, and it made me worse instead, and that was a year ago. The Neurologist in Salt Lake, is now going to contact my doctor here, and Dr. Phillips at Scripps with his findings. Bad news is, that they still don't have a clue what to do about it, and he is impressed that I figured out by research, about the COQ10, L-Carnatine, vitamin E, and Magnesium, because those are the only things he can think of that will offer any help.

[Darrell]

Always good to know what you've got. Never good to realize the effort it took modern medicine to find out, or that modern medicine can't help you any more than the Internet did. At least the treatments are non-prescription and relatively cheap.

After about six months of not seeing my primary care physician and trying hard not to hold a grudge that he was so unhelpful, I have put in for a change of physician with my HMO. I'm certain that he is a good man, but I can't quite let go of the fact that he was so clueless when I needed him most.

[tex62]

It's good to know that the doctor who was so unsupportive initially, finally has results to confirm a diagnosis. It's unfortunate that you've had to battle with doctors when you knew what caused your problems and needed help with treatment. Best wishes and keep us posted.

[cuttingup]

Has anyone tried alternatives to statins? I have ordered BioLife2 to try. I live in Canada and we have a good coverage for drugs for Seniors in Alberta so I doublt this will be covered by my Health Plan since it is not a prescription. I just wanted to know if anyone has tried this alternative. And what others have tried. Thanks!!

[vipergg22]

Well I sit here read what could be my life story over the last 8 years . I started lipitor in the 98 timeframe and within a month I started getting numbness in both feet . Told my doctor what was going on and of course got the same old "it cant be the drug " answer . Never had any kind of problem like this and within a month I start getting this . The symptoms continued to get worse and I was sent to a neurologist and went thru the whole mri routine with no cause found. I finally started checking around via the internet like 3 years later and I was shocked to see so many people complaining about the same thing , I was furious and I imediately stopped the statins . The neuropathy has never resolved itself , after 3 years on statins the nerve damage is permanent. All the other symptoms that I had with statins did dissappear though , bad GI problems (most foods would runn right thru me and I had better be near a bathroom after dinner, I can eat anything I want now without problems ) , severe unexplainable muscle pains , would go bed at night fine and wake up in the morning and my knees hurt so bad I could barely walk to the bathroom . Mood changes where you didn't feel like doing anything a lot of the time . Felt like I was in fog most of the time . These symptoms have all completely healed themselves. My feet very slowly continue to worsen. Have very little feeling left in either foot and basically have to keep a very close on them like a diabetic would . Don't have faith that this will ever resolve itself . Don't wish this on anyone . Good luck to anyone afflicted with this problem and please post anything you to get some relief from the pain and burning and tingling.

[tex62]

Vipergg22,

There might not be anything that will reverse the foot pain/tingling, but if you haven't tried L-Carnitine it might be worthwhile. My husband had extreme pain/tingling in both hands. The hand specialist diagnosed it as carpal tunnel syndrome and insisted the problem had been progressing for at least 5 years for it to be so severe, when in fact, there had been NO pain or problem 4 weeks earlier. He was scheduled for surgery in both hands. The doctor told him that he didn't expect full feeling to return to the fingers because the problem was so severe. He stopped taking the statins and started taking about 900 mg of Q10 daily prior to the surgery. He had the surgery on his right hand and was scheduled for surgery on the left hand about 6 weeks later. In the meantime, he started taking L-Carnitine and within a few days his left hand was fine and all the feeling had returned to the fingers of his right hand. He never had surgery on the left hand and is doing great.

[vipergg22]

Thanks for the advice on L carnitine , have tried all the other things coq10 , alpha lipoic acid , benfotiamine . The benfotiamine helped somewhat so I continue with that so far . I will check L-carntine , any particular brand or any that you can find at like walmart. From what I have read you need acetl-L-carnitine is this correct ?

[Ray Holder]

I find that only L carnitine works for me, but I have had a lot of muscle wastage.

Darrell can use either that or acyl carnitine with similar results, so it may not matter to you which you choose, unless you also have muscle wastage.

Ray

[tex62]

We didn't know whether to get L-Carnitine or Actyl L-Carnitine, so got 500 mgs of each. My husband took one in the morning and the other in the afternoon. I don't know if it would have made any difference but do know that the results were wonderful. My husband recovered from the muscle pain in his legs after stopping the statins and taking CoQ10, but the pain in his hands didn't respond until he started taking L-Carnitine.

[Grannygood]

It's been a year in October since I quit taking lovestatin, I still have neuropathy in both my feet , but the good news is it's not everyday. I take ALA and B-12 Micro-Lozenges. I have learned to live with this, I can't do the things I used to do, but thing could be worse, my choloestrol is 268, as of last month, My doctor wanted me to take Zetia and I told him he was craze.

[Andrea]

I was 42yrs old when i had a heart attack, you all know the story i had done the wrong thing just by having one. Im in the UK and we get free treatmeant. I took this evil tablet for 3 yrs thinking i was best for me , after all i was put on it by a Proffesor of Cardiolgy i thought they know best. After complaining to my Doctor about so meany things going on with my body she put me on every vitamin that you can think of, i new it wasn't a lack of vitamin but she wouldnt listen. I decided after hearing a few things about Lipitor to stop them my self, i had been on 20mg a day for 3yrs. Im now 46 and found out it takes 3 years for the full side effects of the drug to appear, im now 46 and have had to see a Nuroligist who im still seeing, ive spent more time in hospital than i have with my family, £30.000 of tests later and some very painful ones, the bone marrow biopsy and all the rest ive had done. Just to be told that i have 2 types of Nuropathy they say that is rare, i say its a cop out! I am now having to sleep in our front room on a special air matress with a hospital bed, a wheel chair as i can only walk a few feet and thats with a frame, my hands are curled in and my writing that i loved is no more i cant even sign my name. My shopping trips out with my daughter have gone, i cant drive. CHRISTMAS shopping for my family has gone, i couldnt even be with my eldest daughter when she had my 1st Granchild.
Not only did it take my life away, it took my familys life away with me. I would never have believed a tablet could do this, but it has i live with the pain in my bones and muscles 24/7 and have to have someone with me at all times. Now they want me to take more tablets they say to help the Nuropathy but there is no way, il take the pain thanks. Im typing this with one finger and can only use my nail so please forgive all the spelling mistakes im sure ive made. They have told me they still dont know much about it so for me everyday i can see and be with my husband and children is a huge bunus.
Look after your selves,
Hugs and my thoughts are with you all.
Ange

[Ray Holder]

Hi Andrea
It took 4 years for the full damage from simvastatin to become apparent in me, and I got worse for another 14 months afterwards before I found out about the need for Co enzyme Q10 to replace what the statin had sabotaged. UK doctors have no knowledge about the vital necessity of Q10 in every part of the body and I have put several postings on the BMJ electronic edition to make more of them aware, but get almost no reaction in return.

The source of this problem is that almost all research on drugs is financed by the drug companies, and they control the research subjects, non-patentable natural body products have no interest for them, there is evidence that they actively discourage work on such things as Q10. A consultant once dismissed Q10 as "that health food shop stuff", when I mentioned it, I struggle to find a way to convince authorities that life cannot exist in any form without coenzyme Q, and human life needs the Q10 form to exist and function.

Q10 keeps me alive after taking it for 4 years, totally necessary, the heart needs large amounts of it, and it is indispensible in every bodily function, my own doctor recommends patients to try it, but it is not available for him to prescribe.

Ray

[harley2ride]

Well, my condition slowly continues to worsen. At my last checkup, my body temp has dropped again (from 97.0 to 96.7). It has been slowly getting lower and lower over the past 3 years. My muscle weakness has hit my jaw muscles, so my muscles wear out before I can finish a steak or hamburger. The only good news is that my doc has me on meds that keep my pain/discomfort to a minimum as long as the temp is above 40 degrees. When it gets cold, my muscles ache so bad that I can barely walk. There isn't an attorney out there with the balls to go after the drug companies! I wonder how many peoples lives will have to be ruined, and how many people have to die, before the FDA and our legal system step up to the plate. Out of over 50 attorneys, all have said "You have a case, and you should persue this matter!". But none will actually take the case because it won't make them enough money. And some say that the drug companies did have warnings. I never saw (and still can't find), any wording that states that these drugs can cause all the symptoms that many of us have. Sure they warn of muscle pain, and neuropathy, but they don't say it will cause perminent and life changing injuries. They don't mention the memory problems, the vision problems, the slow but steady drop in body temperature, and numerous other symptoms.

I would love to have a few hours in a locked convention center with a bunch of the people that promote these drugs. I would force them all to take their own poison and see how they like the symptoms that result from it. I can only hope that their loved ones and family members are stricken by these drugs. Maybe then it will open their eyes.

I hope that all of you can find things that help with your pain and symptoms in the New Year, and hope that all of us will someday fully recover from these poisons.

[AnneW]

To harley2ride: re: cold all the time.
This spring I was cold all the time also. It didn't matter how many clothes, or how many covers I put on, I would be shivering from the inside out. Before the damage STATINS did to me, our heat source was wood. I would be shivering and asking my better half to put more wood on the fire, and he would be sitting there just sweating because the temp. would be over 80F. In Aug/06 I went to see a Naturopath because no one in the medical field could or would help me. She put me on a combination of Chinese herbs called 'Strengthen the Root'. Her input was that the Right Kidney is our internal temp. control, and if it is not functioning properly, you feel cold. I took this for 4 months, and have now been off it for 1 month without ill effects. Within 2 weeks of taking this herbal I noticed a big difference in my body temp. and it also helped to reduce my pain level. She also suggested incorporating what she called the "pumpkin pie" spices into my diet. e.g. curry, cumin, cloves, ginger, nutmeg. I also use a lot of hot peppers and dry mustard in my diet. I have also been taking a supplement called Curcumin (95% extract). If taken with food it is a digestive aid, and taken away from food it is a natural anti-inflammatory. It is also an ingredient the herbal I was taking. Maybe you could check this out and hopefully this information will be helpful to you. ( I still get cold easily, but I personally think that a lot of that is due to the fact that I am so limited to any physical activity. I notice it the most when I'm tired.)
AnneW

[Biologist]

Beside some fatigue, I suspect that neuropathy may be around a while for me -- as it has been for others. This research (excerpts below) that I just found maybe helpful to us. It is specifically for treatment of HIV drug-generated neuropathy, but the healing mechanism is probably the same as for statin-generated neuropathy. Anyway, it solves for me the question of whether to take acetyl-L-carnitine vs. L-carnitine. I will start taking both at at least 1,000 mg. or more per day -- just in case it is the former rather than the later that is best for neuropathy (I currently only take 1,000 of L-carnitine). I might just take a lot more of each though -- up to the dosage they do in the study. They comment: "Apparently, ALCAR was well tolerated."

Here is the quote on the dosage amounts:

"To assess the efficacy of ALCAR (acetyl-L-carnitine), researchers in the United Kingdom administered the drug orally at 1500 mg twice a day for up to 33 months in 21 patients who had established antiretroviral-associated PN and were not on other PN therapies."

Here's the URL:

[http://www.thebodypro.com/journalview/aug04.html]

Here are some selected quotes:

"Acetyl-L-carnitine (ALCAR) is an integral transport molecule for free fatty acids as well as an acetyl-group donor in high-energy metabolism and free fatty acid beta-oxidation within mitochondria. In addition, ALCAR has been shown to promote nerve regeneration and to be neuroprotective in patients with diabetes, preventing development of PN and reducing pain scores in those with the sensory neuropathy. Less is known about the effect of ALCAR in antiretroviral-associated PN."

"Biopsies of the skin from the most effected leg were performed at baseline in all subjects and in the 5 controls. Eleven subjects had a follow-up biopsy. The controls had normal cutaneous innervation patterns. The subjects with PN had almost complete absence of nerve fibers in the epidermis, subepidermal plexus and around the sweat glands. The use of ALCAR by those with repeat biopsies at 6 months led to marked normalization of the innervation of these structures. Quantification of fiber types was accomplished by immunostaining and dramatic increases in small sensory fibers in particular were found."

"This study provides initial evidence for the efficacy of ALCAR for antiretroviral-associated PN. The biopsy results are striking and bolster the clinical improvements observed. These exciting findings certainly support larger clinical investigation of this agent and offer renewed hope for people who are suffering from antiretroviral-associated PN. The results also suggest that this may be a potential, and maybe cheap, therapy for other mitochondrial toxicity disorders and this too requires further study."

Biologist

[dwhitbeck]

I prevously posted a topic about gemfibrozil and and pravachol. I spoke with a heart specialist a few months ago, asking about niacin. He stated that niacin is no good because it does nothing to increase HDL. I think he was just trying to hide his ignorance on the subject. He told me to take 10 mg of Lipitor. I tried taking 5 mg and it actually normalized my cholesterol and tryglicerides but it seemed to gradually worsen the neuropathy. The first couple of nights when I lay down, I felt a buzzing sensation in my feet. My family doctor, however, finally agrees with me that statins could be the possible cause of neuropathy in my feet. I am now taking niacin, with his approval, and am working my way up to 1200 mg a day. I am at 750 a day now. I have had some flushing but found that I can get used to it rather easily. Taking it after a meal and/or taking it with a baby aspirin reduces the flushing, sometimes I don't notice it at all. I will get my cholesterol and tryglicerides checked in a couple of months and post the results. I still have the neuropathy but it has not gotten worse. The thing that seems to help that condition the most is regular, vigorous excercise. Also I am taking 200 mg of CoQ10 a day. I feel that the drug lords have pulled the wool over the eyes of the doctors. Some of the literature mentions nerve damage but it is hidden in a mound of fine print. I noticed that the flyer the pharmacist hands out with pravachol does mention nerve damage. Both the heart specialist and a neurologist claimed that statins can not cause neuropathy.