Does this sound like Lipitor side-effect?

[me2]

Hello,

I am new to this forum. Please forgive my long post. I really need some advice. I have been having problems for just over a year now. I have been on Lipitor for about 3 years. I had been a regular walker (5-6 days a week 3-4 miles a time). Last year I developed tightness/cramping in my right calf. (My muscle felt like it would rip) I had some in the left but not as bad. It got to the point I could not walk long distances and when I do walk I have to go slow. I was tested negative for DVT. My first thought was Lipitor and my CPK was checked, it was normal. I did go off the med for 2 1/2 months, but I did not see a difference. With reassurance from my docs, they said I could go back on it. It wasn't until a few months later there was an improvement (I was back on the medication by then).

I saw an orthopedic doc and he told me I had chondromalasia. I have had physical therapy. During my first few sessions, when I would stretch my right leg, it would shake. They sent me back to the doc. He did an MRI and ruled out spinal stenosis. I do have a history of congenital heart problems, but there hasn't been anything to indicate there is a problem. I have been able to ride a bike when my knee doesn't bother me too much with no problem. The pulses in my legs and feet are good.

That round of physical therapy focused more on strengthening and didn't help with the cramping/tightness (even with the stretching). After that was complete I didn't notice any change. After resting for a few months, the pain got some what better. (this the same time period I am talking about above when I went off and on Lipitor.)

It started up again a few months ago progressively that now I am back where I was a year ago. The same kind of pain/tightness. I am getting PT at a new place where they focus on manual therapy. I do have tight areas that they have been working on. I know there are some foot issues - I have different shoes now, but my physical therapist keeps saying that he thinks that it is the lipitor. After reading lots of posts, I am kind of thinking the same thing. What happened to me was very sudden. I did not have an injury. The docs said that it couldn't be the lipitor because I had been on it for a while and my cpk was normal. I have only been on 10 mg. My cholesterol went way down to like 116. I went off Lipitor again on Friday because I am out of ideas about what is causing this and the docs can't figure it out. I really miss exercising and being able to walk normally. I am a little concerned about the saftey of taking CoEnzyme Q10. Does this sound like it could be the Lipitor causing this? I would really appreciate any advice.
Thanks.
me2

[Darrell]

A CK test is pointless for statin-induced myopathy except to detect severe cases of muscle breakdown (rhabdomyolysis). Print this out for your doctor:
ww.annals.org/cgi/content/abstract/137/7/581

Your body makes Q10, except to the extent that statins wreck the process by destroying a precursor. CoEnzyme Q10 is prescribed by many cardiologists to accompany statin therapy. Merck has a patent for combining Q10 with statins into a single medicine. Many of us on this board have been taking Q10 for a long time. Search this site for relevant discussions.

Also search this site for discussions on L Carnitine (just search for "carnitine").

[Darrell]

Oh, and as for your symptoms, your leg cramping/tightness sounds very much like my statin damage to me. Especially if it includes "exercise intolerance". Does your leg feel better (better, not good) first thing in the morning and then start aching worse as you are more and more active? Does an hour of activity have to be followed by three hours of rest to avoid having the ache become overwhelming? Do your affected muscles get weaker as the day goes on? That's the way my life was for 16 months before starting the L-Carnitine. And still is if I miss a dose.

I did the PT thing for awhile. My leg muscles were very tight and I had lost some range of motion. I thought the stretching exercises were somewhat helpful and did them in small batches at home for a few months. The Catch-22 was that exercise was exercise and actually contributed to the ache. I abandoned strengthening exercises very quickly because I needed the capability I had for normal activities more than I needed strengthening. [Hmmm... do I want groceries or strengthening exercises if I only have enough exercise tolerance for one?]

[me2]

Thanks Darrell for the information.

My leg pain is mostly the right leg, but some left. It is pretty much just in the calf muscles and around my right knee. It just seems strange that a week before this all started, I was fine, walking a lot. It wasn't really bad right a way. I thought I just had tight muscles. I would stretch, but that really didn't help. In fact, in PT, stretching really was very uncomfortable and never really improved in my right leg. I know that my therapist was baffled by my situation as am I. Even just standing can be very difficult to the point where I have to sit down.

When I get up in the morning, if I don't stretch a little before getting out of bed, I am very stiff. It gets a bit better after I am up. But, if I try to walk, I can for a little bit and then the cramping/tightness starts up. I stretch a bit and it might extend how far I can walk for a little bit, but then it just gets to be too much. I really don't like how it feels like my muscle could rip. I don't get aching so much in my muscle. Just overwhelming tightness and some cramping. I have iced it and it helps some, but still it continues to happen. I have been having myofascial release lately and things were pretty tight, but the PT said it feels better to him, but there has been no improvement in the tightness/cramping. It is extremely frustrating to go from being a regular exerciser to not being able to do much at all.

My husband is on Lipitor too, and he has had times in the past year where he felt like he popped something in his leg. One time he was jumping up to catch a frisbee and it popped. His foot and ankle swelled up. He has some tightness at times too. I think it is the Lipitor. I am going to look into the Coenzyme Q10 and L-Carnitine for both of us. I don't know if he can get off the med because he had bypass several years ago and he has strong family trait of high cholesterol.

I really appreciate your responses.

[Darrell]

Hmmm... your leg muscle symptoms don't sound quite like mine, but I sure wouldn't rule out statins as the cause. My problems started at the knee, then became obvious at the calf, and then ran from foot to thigh. Then the other calf started aching too, but luckily I stopped my statin before that degraded further.

As for your husband's "popping", I've been there and done that. My first symptom was a knee hyperextension while walking across level pavement at an average pace. In less than three weeks I almost couldn't walk at all. That's when I stopped Zocor -- when I went downstairs one evening and almost couldn't get back up a few hours later. Anyway, after the knee hyperextension there was a long period of knee popping and, to a much lesser extent, ankle popping. I literally couldn't turn around without something making a cracking sound and feeling like trouble. The PT said (and this is a very loose paraphrase) the knee popping was because some of the four muscle groups associated with the knee were affected more than others and the forces weren't balanced across the knee the way they normally would be. All the popping resolved in a few months after I stopped my statin. Not sure if it what helped was stopping the statin, starting the Q10, starting the stretching exercises, or all of the above.

[me2]

You mentioned your knee hyperextending, that is one of my big problems, mostly on my right knee. I have a lot of pain and popping. I should have mentioned that when this started, I did have pain around my knee and that is when I was diagnosed with chondronmalasia of the patella. I have always had some minor knee issues, but the really got bad. I even told the doc when I am lying on a flat surface, I have to have something under my knee because it feels like it is hyperextending. My current PT sees (it wasn't mentioned by the others) that my knees are doing that. Like I mentioned before, I was not a couch potato before this started. It kind of feels like all the muscles and ligaments around my knee have been affected. Sometimes it feels like a burning or prickly sensation too.

That is interesting that yours was unilateral at first too. The docs really dismissed this when it started in the right only. The symptoms in the left are usually not as bad, but it can get to the point where I have to sit because they are both hurting.

Do you have any side-effects from taking the Q10? Are you taking L-carnitine too?

[bunnylady]

I too had some knee problems before this all started- I controlled it with semi annual cortisone injections and some bicyclying- now the pain is so horrible I collapse on my bed or in a chair- I have had terrible allergies since this started and migraines wherein I feel like a hurricane went thru my sinuses and slammed up against my skull- ususally on the right side- I have been migraine free for 3 days since using Flonase and taking every vitamin every night- without IMITREX for migraines in my system my muscles are not so weak and today I got out of bed and stood!!!

My symptons are much worse during the day and better in the evening- I push myself to stay up until 1 or 2 a.m.- the headaches are finally gone due to my takng imitrex and I feel good- then I know I'll go to sleep and wake up with another headache- my thinking is maybe I had slight sleep apnea and the excerbation from the Crestor and Lipitor have made the apnea so bad I was not getting enough air intake- I'd wake up with my nose completely congested, my throat sore and my head pounding- usually I'd wake up because I gasped for air or my head hurt so bad- I knew once I could control the headaches I could then start on regaining my muscle strength- because i'd been in bed so much I didn't realize how much strength I had lost- I went out in the real world yesterday and felt a bit out of my element- I take a cane with me now just in case or grab my husbands arm

the blood bruises on my arms are almost gone but in my spa I noticed with pin dot blood spots on both legs

if I was a postal worker I'd walk into these drug companies lobby and fire away! I 'd just shoot their knees and feet so they could feel pain for many months!

[Darrell]

I take both Q10 and L-Carnitine, me2.

I've been taking the Q10 for over a year and a half without any known side effects other than feeling a lot better when I first started it and since then. I take 600 mg/day -- 400 mg in the morning and 200 mg in the late afternoon. I can miss a dose without obvious effect.

I've been taking L-Carnitine since late April because it eliminates the "exercise intolerance" and ache in my affected leg. I can have a very active day with it, but without it I can only be active for about an hour before needing 3-4 hours of rest to recover. It's not perfect: my leg still gets a bit weak by late evening, but not to a disabling extent. I take 1,500 mg in the morning and 1,000 mg in the late afternoon. On very active days I may take more (e.g., another 500 or 1,000 mg after lunch or dinner). I try to "load up" about an hour before any intense exercise like mowing the lawn. That's 2,500 to 3,500 mg per day depending on activity level. I cannot miss a dose without obvious effect. I value this stuff so much that I carry an extra 2,000 mg in a pill container attached to my key ring.

[me2]

Darrell,

Thanks for the info on the Q10 and carnitine. I am concerned about over doing supplements. I know that Q10 can lower bp and I am on a blood pressure medication, but not for my blood pressure. I did pick up some yesterday and started the 200 mg Q10, but all I could find was 500 mg of carnitine and I wanted to see if I could split the pill before starting it and if it mixed with my other meds ok. How long after starting the Q10 did you notice a difference? How long after stopping statins did you notice a difference?

Also, do you have more pain in one leg over the other or are they both equally affected? Does your doctor support you in all this or do they not believe that statins did this to you?

I really appreciate your help.

Best wishes,
me2

[tex62]

Me2,

A normal CPK and lack of symptoms for several years while on statin drugs, does not mean that the drugs are not the cause. My husband took Zocor 20 mg for almost two years before symptoms started. His CK level was tested every six months. It continued to get higher, but was never outside of normal range. His triglycerides remained somewhat outside of range, so our doctor added Tricor, in addition to the Zocor. He developed a host of problems including muscle pain, severe pain in his right knee, carpal tunnel-like pain in both hands, and the list goes on. His doctor agreed when he told her that he wanted to stop both drugs, but a lot of damage had already been done. He had knee surgery to repair a torn cartiledge and carpal tunnel surgery on his right hand. After being off the drugs for three months and taking Q-10 in very large doses, the left hand got okay and the surgery for that hand was cancelled. He had been very active prior to the statin problems, but had to give up all activity for several months. It took about 9 months to fully recover and get back to full exercise. From experience, I firmly believe that CPK levels are not a good indicator of statin associated problems in some people.

A total cholesterol level of 116 seems much too low. Several studies point to increased all-cause mortality and depression in people with low cholesterol. You can search on key words: cholesterol and all cause mortality and find a number of references.

Hopefully, your doctor will be supportive about staying off the drugs and taking supplements. If not, I would take articles to him/her about very low cholesterol and ask why those articles might not apply to you. You will find the articles in reliable medical journals.

Best wishes

[me2]

Thanks text62,

The more I research about this, the more convienced I am that it was the Lipitor. The strange thing is my husband is on a higher dose and before I started having any problem, he had the popping thing happen in his ankle and it swelled up. All he did was jump up to catch a frisbee. Right after this, I started having problems. Being only on 10 mg, my docs and I thought it couldn't be the problem. I went off the medication for 2 1/2 months last year and there was no change. I was a little better early this spring and I don't know if it was a combination of rest and being off the medication for that short period of time that made it better, but it didn't last. I think there is a difference between the way women and men tolerate statins. My husband complains about tightness in his calves and he has had that popping thing happen twice to him, but he is still as active as before. I can only walk short distances before it acts up.

How much Q-10 did your husband take? Is he still on it? Does he take L-carnitine too?

Thanks for sharing. I appreciate it.

[Darrell]

me2, if "10" is normal and "0" is where I quit my statin, I was up to "3" a few days after stopping the statin and then "6" a few days after starting the Q10. I stayed at "6" or "7" for over a year after that. Then L-Carnitine brought me up to "9" or "10".

Only one of my legs is affected -- the right. The symptoms were spreading and worsening gradually, and I stopped my statin while the left leg was only having mild symptoms in the calf and ankle. The left leg fully recovered.

My doctor was from the ignorant "normal CK means you're fine" school of medicine. He sent me to an orthopedic doctor (mainly due to me knee) who sent me to a PT. The orthopedic doctor could readily see that my right leg muscles were very tight and my range of motion was sub-normal. He did a battery of tests to rule out lots of things, and in the end he probably believed it was the statin. But he had no therapy to offer other than PT. After a few months I gave up and bought a cane and adjusted to the idea that I may never recover further. A year later, Ray Holder on this board suggested that I try L-Carnitine. He's one of my heroes now.

I know L-Carnitine isn't going to help everybody here, but it's amazing stuff for those of us who benefit from it.

[Darrell]

Oh, and I think it's worth adding that my "normal CK means you're fine" doctor is no longer my doctor. I was miffed when he basically dismissed my problems when he saw a normal CK. But I was infuriated when I found out that lots of people with statin-induced myopathy have normal CK levels and he didn't know that. I though I could let it go and be forgiving of his ignorance, but I couldn't. I dropped him a few months ago.

[me2]

Darrell,

It is interesting that your right leg had more problems than the left. That is the same with me. I went to an ortho guy too - calf muscles too tight, etc, etc. I am concerned that I am going to have problems convincing my doc about this. I recently saw him because I wanted more PT but more of a manual kind instead of the strengthening/stretching kind. He sent me to a physical medicine/rehab doc. That doc said that if PT didn't help, he could inject the trigger points. I don't think so. It is my PT who has really been pushing this issue because he has seen others with this too.

It seems like docs should be more aware of this issue since there is more evidence coming out about it.

[tex62]

Me2,

My husband took 100mg of Q10 the entire time that he took Zocor, but that didn’t prevent his problems. He continued with that for two months after stopping the Zocor with some improvement, but worsening problems with pain in his hands, arms, and back. Therefore, I’m not surprised that you didn’t see improvements in knee/muscle pain after two months. On New Year’s Day 2005, he followed Dr. Graveline’s advice and increased his Q10 to a much larger dose. He took about 1100 mg’s per day and started seeing a big improvement within the week. It wasn’t until Ray Holder posted information on L-Carnitine that he tried that (500 mg’s twice a day) and the pain in his hands, arms, and back was gone within days. He feels great now and still takes 300 mgs of Q10/day and 1000mg of L-Carnitine. Recently, he cut back on the Q10 to 150 mg’s, and the strange jerky movements while sleeping returned to some degree so in went back to 300 mg. In a few months, he will probably experiment with reducing both the Q10 and L-Carnitine.

Just as with you and Darrell, my husband’s knee pain was limited to the right leg – probably just a coincidence. Also, like Darrell, my husband’s CK levels were never outside the normal range even though his symptoms were severe.

When my husband was in physical therapy after his knee surgery, he overheard another patient describing his symptoms. My husband asked him if he was taking statin drugs and he said that he was. The physical trainer advised him to go to his doctor and talk with them about getting off the drugs. The trainer said that he sees a lot of cases that he thinks are statin related. He said that he always makes the patient aware of the symptoms and advises them to see their doctor. If only most doctors were as astute!

[Darrell]

I don't think it's a mere coincidence that we are seeing a lot of right-leg problems. For right-handed people who drive cars in the U.S., the dominant and strongest and most-exerted leg is probably the right leg. So the skeletal muscle of the right leg is probably the most energy-intensive of the skeletal muscles. When statins gradually damage the mitochondrial "power houses" of the muscle cells, the most energy-intensive and most used of the skeletal muscles would be the first to reach the threshold of our awareness.

In my progression, first my right calf ached, then it was the right calf and ankle, then it was the whole right leg, then the left calf and ankle started aching too. I have no doubt that if I had continued my statin awhile longer, both legs would have been fully affected. Luckily, I stopped my statin when I did and the left leg damage was still reversible. Lots of others on this board were not so lucky, possibly because their damage was not as gradual and/or it took them longer to realize that their statin was their problem and/or they had other problems that masked some of the statin problem. Minor muscle problems are sometimes dismissed as "old age", but I really didn't think I should be losing my stair-climbing ability suddenly at age 50.

[me2]

That is an interesting thought about why the right leg is a problem. It makes sense.

I have been looking up info on the safety of CoEnzyme Q10 and L-Carnitine. I checked with my pharmacy about my other medications and interactions. I am concerned because L-Carnitine interfers with synthroid and the Q10 interfers with Procardia. I talked my cardiologist's office and they said they couldn't make any recommendations about the supplements. They know of patients who are on them. I explained about the interactions and from what I read, Q10 can lower blood pressure. So I guess if I am going to do the Q10, I have to watch the my blood pressure doesn't go to low. I am not on it for high blood pressure in the first place. I am reluctant to try the carnitine. I think that I will try to pay more attention to the food sources of this.

[bunnylady]

Darrell- now I am having severe lower intestinal cramping and heaving- like dry heaves- I am worn out from it- I had IBS before all this but this is like I've never had- any my headaches are back- is it the L Carnitine causing my cramping- I tried to cut back on it but then I couldn't walk because of all the aching in the legs- I took 400 mg in the am. and then another 400 this afternoon and 5 hours later my stomach is finally calming dow after herbal remedies and Immodium A.D.

call me miss sickie

[Darrell]

I have never had an intestinal problem from L-Carnitine. I take 1,500 mg every morning and 2,500 mg to 3,500 mg total per day. That doesn't mean you are not having problems with it though. How much were you taking before you cut back?

Sounds like my wife's occasional reaction to food like fish when we eat out. I don't think it's the fish though: she never has the problem when we have fish at home. It's some additive or contaminant. Her system has a "hair trigger"; I have the "cast iron stomach". What if anything did you eat out in the hours preceding the onset?

[Ray Holder]

Before I joined this forum, I always enquired of those interested, what previous medical problems they had, besides the major statin induced difficulties, before suggesting Q10, such as high blood pressure and diabetes, but as Q10 appeared to be in such general use in the States, I have refrained from stressing the point. The posting by me2 has emphasised the need to be careful when some other problems exist, and I have suggested over here that you should try to get your doctor's cooperation when using Q10 in these cases.

Take blood pressure, for example, it was probably raised because of heart muscle weakness, caused partly by reduction of Q10 with age, but worsened by statin damage to Q10 production. Now your doctor will not be likely to recognise that as the reason, and he gives you a drug to lower BP. If you now take Q10, this may well improve your heart muscle strength, which would bring your BP down to normal, but the drug is trying to send it lower still, probably too low, and unless you take your BP regularly and adjust your meds accordingly, you could run into problems such as feeling faint.

Diabetes is another case in point, if you take Q10 it may improve your body's own insulin supply, and your sugar level may drop, so that you need to make adjustments to your diet to compensate.

Synthroid is possibly a similar case, it is given to make up for the deficiency in your own production in the thyroid gland, and improvement brought about by Q10 will give the same result as an overactive thyroid gland, but here only a doctor can check on that by making a blood test, not possible for the patient at home.

So you see, unless you are competent in taking the necessary counter measures, you could run into trouble. I started taking my blood pressure very early on, as it was of no use expecting to call on the doctor so frequently for this purpose, I would need to live on his doorstep.

The point about interference with drugs is really stating the reverse of what is actually happening, Q10 and carnitine are necessary body products, whose deficiency led to symptoms for which the drugs were administered. The correction of the deficiency by supplementation is only setting things back to near normal so that the drugs are either not required, or needed in smaller quantities.

I have been thinking about those with muscle problems who have not yet started taking carnitine. It would help if these could persuade their doctor to take a carnitine level blood test, this should show a deficiency, or, to give its medical name Secondary Carnitine deficiency, with known need for carnitine medication, which the doctor is able to supply as treatment (Carnitor). This might be a way to get the MD professionally on side, without giving the impression that he is into alternative medicine.

Ray