My life since statins ...

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby prof » Fri Dec 09, 2005 12:04 pm

Senate and Congress is the issue. The majority of the FDA reviewers are dedicated people. But the administrative leadership there are mostly gutless, spineless politicos. And the reason they are allowed to be so is that Congress has consistently opted out of funding drug safety, and putting in independent administrators, often because they are themselves on the pharma take.

The FDA is the public target (kind of like cholesterol!). But that's not who pulls the strings.

prof
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Recovering from Statin Side Effects

Postby tex62 » Fri Dec 09, 2005 11:06 pm

My husband’s experience with Zocor and Tricor reflects many of the symptoms that I’ve seen described on this site. He took Zocor 20 mg for just less than two years. His first symptoms were joint pain and declining sex drive. He was 61 when he started taking Zocor and his doctor attributed the symptoms to normal aging. One month after starting Zocor, his Cholesterol had improved somewhat. Total cholesterol was 182, HDL 48, LDL 102, and triglycerides 161. A year later, total cholesterol was 178, HDL 46, LDL 90, and triglycerides 209. After a year, triglycerides had increased rather than improved. His triglycerides were 94 at six months, while on a low carb diet, thus a good temporary response to a temporary diet, but not to the drugs.

After a year, symptoms included increased muscle and joint pain and impotence. His doctor still attributed this to age. We don’t have the results of the lab test done at 18 months, but numbers remained about the same as previously with triglycerides still high. As a result, his doctor added Tricor 145 mg to the Zocor 20 mg regiment. Almost immediately things started to spiral downhill. The joint and muscle pain increased. He had swelling and severe pain in his right knee. He got tired extremely easily. A month prior he had played golf five days a week, walked 18 holes, and carried his clubs with no problem. At his annual physical, he weighed 173 pounds (5 feet 8 inches), which is when the Tricor was added to the Zocor. Within a month, he lost 8 pounds. He appeared to lose muscle weight throughout his body.

He went to an orthopedic surgeon who diagnosed a torn cartilage in his knee. Following surgery to repair the torn cartilage, the doctor presented pictures that were taken during surgery. He said that he knew for sure why the cartilage had torn. The pictures revealed many sharp gouty crystals which had literally torn the cartilage. There was even some damage to the bone. My husband had a gout attack about 40 years ago. Since then, he has taken either Benemid or Allopuranol to control the gout and did not have problems until the cholesterol lowering medicines were added.

During the knee surgery, my husband’s blood pressure got very high (190/93). The next week, it was about the same at the dentist office; thus another visit to our GP. She was surprised to hear that gout had caused the torn cartilage and that the blood pressure was so high. About this time a new symptom developed. My husband suddenly developed severe pain in his right hand that appeared to be carpal tunnel syndrome. He also developed a great sensitivity to cold. At that point, I started researching all of these symptoms. Among other things, I found this web site. In the process of reading the latest Zocor and Tricor product information sheets, I learned that all the symptoms – weakness, painful muscles, fatigue, impotence, hypertension and gout are side effects of Zocor and Tricor, with hypertension and gout being listed as a side effect of Tricor. My husband went back to the doctor for a follow up to the high blood pressure. At that appointment, he told her about the research we had done and that he felt certain the problems were ALL related to the drugs – Zocor and Tricor. She agreed that he should stop taking them.

Within 10 days of stopping the drugs, the impotence was gone. Within 2 weeks the muscle and skeletal pain in the legs was almost completely gone, as well as the sensitivity to the cold. He has been to see a hand and wrist specialist and is scheduled for muscle and nerve tests this month to confirm a diagnosis of carpal tunnel syndrome in his right wrist. Both arms are very weak, and there is still pain in the shoulders and upper arms. Before the drug related problems started, he played golf a lot and had great flexibility and strength in his upper body. Prior to age 60, he was a pilot and had annual FAA mandated physicals. He was in excellent health. Now it is difficult to raise his arms to his side at shoulder height or grip things with his hands. If good attitude could cure, my husband would already be fully recovered. He’s been on a low carbohydrate diet for about three months and plans to continue that since high triglycerides seem to respond to this diet. When he was taking Zocor, he also took 100 mg of Q-10 each day. Now he has increased that to 150 mg twice a day. There doesn’t seem to be much information available, even among doctors, as to how to treat patients who have been injured by these drugs. If any of you have had similar muscle and nerve problems and recovered, I would appreciate any advice as to what you did to help aide in the recovery process. For those of you who have taken high doses of Q-10 and the B vitamins, has this brought about complete recovery from your statin induced symptoms?
tex62
 
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Postby prof » Sat Dec 10, 2005 1:22 pm

Tex--First of all, your husband sounds like a great guy; and you seem great yourself! Sorry you are having to go through this. The good news is that the source of the problems appears to be clear. (We now know that mixing a fibrate like Tricor with a statin increases the likelihood and severity of problems very significantly).

The fact that your husband has had this much recovery in a couple of weeks is a very good sign. I am also trying to recover from statin-related injuries that began almost as soon as I started Lipitor (but I didn't immediately recognize them) and got me off of it in two and a half weeks. And this was mostly at a split-pill dose (5 mg).

I think Dr. G. and others here will recommend higher doses of CoQ10 then your husband is taking, and possibly L-glutamine. I am using a somewhat higher dose (about 500 mg./day) and have seen some improvement in less than a week. Of course, that might have happened on its own.

The symptoms that seem hardest to reverse (besides the ones that kill you) are those of peripheral nerve damage. In the studies I've seen, about 50% of the time they do get better, but it can take a long time (months or more). In your husband's case, the fact that the sensitivity to cold has already improved is also a good sign. The emg should show whether there is nerve damage. Even then, things can improve, and it may not be "carpal tunnel" in the usual sense.

I am also working on recovering--for me, a patch of numbness/tinging that developed on upper leg, and then some lower leg symptoms, which are already better.

Someone else will hopefully provide more specific info.

Good luck to you both,

prof
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Postby tex62 » Sun Dec 11, 2005 5:30 pm

Prof, thanks for the reply. Actually, I did some research after our doctor prescribed the addition of Tricor. It didn't seem advisable, so before my husband filled the prescription, he talked with our pharmacist. Our pharmacist said that he had called a leading cardiologist the first time he had a combination prescription to fill. The cardiologist indicated that he had testified before the FDA on these drugs and that the combination was safe and effective. My own interpretation after my husband's personal experience is dangerous and unproven.

We will probably increase the Q-10 and look at L-glutamine as an additional supplement.
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Postby carbuff » Tue Feb 14, 2006 10:39 am

Hi, my name is Jamie. I am writing to you in regards to my mother and hoping that you may be able to help me. My mom has been on cholesterol medication for almost 15 years. She is only 48 years old. The medicine she has been on ranged from all different types of statin drugs. The last being Zocor and then a switch to Vytorin. She has always suffered from stomach problems for many many years and then the last couple years she has noticed muscle weakening in her hands and cramping. After vigorously exercising regularly (by this I mean running 4 days a week, Curves for women, lifting weights...very active like you), the problems seemed to get worse. There is not much muscle left in her hands and she finds that her arms are very weak. Her muscles are easily tired and after a recent EMG she has noticed twitching throughout her body. She also seems to have slurring in her speach and difficulty writing. It is hard for her to grip things and she is losing a lot of her motor skills. As far as walking, she is ok. Just this morning, though, she complained to me that her legs felt really soar, but she didn't even do anything yesterday.

Basically all the doctors are leaning towards ALS. I just have a hard time believing that this is the cause. And of course, I don't WANT to believe it. Could it be possible that these really are side effects from the Statin Drugs?? Suppossedly her EMG results were not great and the last doctor she saw seemed to think it was ALS. Did anything show up on your EMG?

She has been off the statin drugs for 2 months now. Her symptoms are not any worse...they have pretty much stayed the same. Recently she has gone on a program were she is taking a large dose of vitamins and CoQ10. The amount of vitamins she is taking is unbelievable. Roughly 75 pills a day! She just started this program yesterday.

I refuse to believe that my mom is suffering from ALS. I have been researching quite a bit and don't understand why the doctors seem to overlook this. She was the one that brought it up to the doctors and she was the one who decided to take herself off of her cholesterol medication.

I do understand that she was on these statin drugs for years and years with no real problems. Her symptoms were gradual, but now are disrupting her life. I did notice that these symptoms seemed to occur after her switch to Vytorin and vigorous exercise.

I'm just wondering if you have any information that you could provide me. Do you know of anyone to reccomend to contact? Have your symptoms gotten better since you've stopped the medication? I am willing to do whatever it takes for my mother to get her back to normal. Or at least to where she can be happy again. This is such a tough thing to go through...and I'm sure you understand. Its just not nowing if she could have a life threatening disease. The thought of this can truly drive someone crazy.

I am so worried about her, but again refuse to believe that she has a life threatening disease. I'm just trying to get my mom back. I appreciate you taking the time to read this. I would be so greatful for any insight, suggestions, or information that you have. You can contact me at this email address or phone 1-800-996-6604 (this is my work number and is usually the best place to reach me M-F 8:30-5:30, or you can call my cell phone anytime other than that 989-464-1646)

I wish you the best of health hope that you are on your way to recovery as well. God bless you and your family.


Thanks you again.
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Reply for "Jamie"

Postby sos_group_owner » Tue Feb 14, 2006 12:14 pm

Hi Jamie,

Re: I do understand that she was on these statin drugs for years and years with no real problems. Her symptoms were gradual, but now are disrupting her life.

Especially...
[I did notice that these symptoms seemed to occur after her switch to Vytorin and vigorous exercise.]

Your obervation is correct: Changing from one statin to another or increasing a statin's dose is the main [side effects] trigger for those taking statins for several years. Doctors dismiss the idea that the statin is the cause of side effects because their patient appears to have tolerated the drug for so long. Another trigger is "re-challenging" with the same drug.

Your Mom's CoQ10 levels have been decreasing for the 15 years she's been taking statins. Severe CoQ10 deficiency can take awhile to correct and high doses might be required. Please read these 2 excellent articles written by Dr Graveline.

Statins and CoQ10 Deficiency:
http://www.spacedoc.net/statins_CoQ10.htm

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

Fran
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Postby tex62 » Wed Feb 15, 2006 12:18 am

Jamie,
I know how frustrated you and your mom must be. I was willing to travel anywhere to find a doctor who is experienced in treating side effects of statin damage. Unfortunately, I wasn’t able to find anyone. I don’t think the test my husband had was called an EMG, but he did have some type of nerve function test which revealed that he had very severe nerve function in his right arm/hand and severe function in his left arm/hand. He just had carpal tunnel surgery in his right hand and the results are good so far. It will be weeks or months before we know how complete the recovery will be – we’re hoping for 100%.

If you search Google for the keywords “statin” and “ALS” you will find a number of links that associate statin usage and ALS like symptoms. You are wise to pursue the correct diagnosis – is it ALS or side effects from statins? I hope you see signs of recovery, soon.

Two months after my husband stopped taking Zocor/Tricor, I was concerned that he would never make a full recovery. There were times when he even seemed worse. It’s been almost four months now and we are now optimistic that he is going to make a full recovery – time will tell. His improvement has come in “leaps” for the last couple of months. We were careful not to make too many changes at one time with supplements. First he stopped exercising and playing golf since that seemed to cause setbacks. He started taking 1300mg to 1500mg of CoQ10 daily, a magnesium tablet, and B-complex tablet. I don’t know if this is the right answer for everyone or even if this contributed to my husband’s recovery. I believe that attitude is very important in recovery - the body seems to follow where the mind leads it. I don’t know how my husband managed to maintain such a wonderful attitude, but he always remained positive.

I wish there was a better answer to how to fix this stuff. Best wishes as you and your mom as you work to regain her good health.
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Postby carbuff » Wed Feb 15, 2006 9:09 am

Hi Tex,

Sounds like your husband is on the road to recovery. My mother has been off the Statins now for almost 4 months also. Like you said, some days are better than others. She has been taking it easy and not exercising as much also. She used to run 3-4 miles every other day. But now she is just taking it easy because over exercising causes the muscle aches, twitches, and extreme fatigue.

One of the things I wanted to mention to you is that we found a Doctor named Jonathan Campbell. He specializes in natural strategies for recovery from Statins.

ww.cqs.com is where you can find the website...or just google his name.

Anyways, he has a list of supplements that you should be taking the help rid your body of the statins and to help with your cholesterol. She has been taking all the vitamins three times a day with meals. It is a lot of pills to take...almost 75 a day. Some of the list include, CoQ10, B-12, Fish oils, Vitamin C....and some other funky powder. She purchases a book from him with a list of everything she should take. I know that you have to pay to speak with him, but she just purchased a book (something he actually typed and wrote in). It lists things you should stay away from and all the supplements to take.

I'm not sure if this has helped her. As far as the twitching, that has decreased. Her spirits seem better and we even took the list into our family doctor and neurologist and they both agreed that none of the supplements would harm her in any way.

It might be something that you and your husband want to look into. It may make a difference in his recovery. I think it is helping my mother.

If you would like more information, let me know. I know at this time you'll pretty much try anything. My mom even went to a holistic Chiropractor...not sure if that did any good, but it was worth a shot.

Thank you for your concern. I'm actually hoping that my mother's symptoms are from her Statins because ALS would be a lot worse.

Take care Tex. You can email me if you would like.

jayshootz@hotmail.com

Sincerely,
Jamie
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Postby tex62 » Wed Feb 15, 2006 11:30 pm

Jamie,

I hope you will update this site regarding your mom's progress after she's been on the supplements for a month or so. My husband seems to be making good progress, so we're not going to "rock the boat" at this point. Thanks for the information and the link.
tex62
 
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Postby carbuff » Thu Feb 16, 2006 8:54 am

You're so welcome! I don't blame you for not wanting the mess with anything right now. Be strong and have faith that things will get better. You and your family are in my thoughts and prayers.

I will keep you updated on my mother. So far since she has been taking all her vitamins her twitching has decreased. She seems to feel a little better and she has better spirits. She had an appointment at U of M at the end of this month with another Neurologist. She decided to back it up another month to see how she progresses.

Take care,
Jamie
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