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statin myopathy treatment?
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ltuk posted:
My doctor has taken me off of my statin because of statin induced myopathy but her treatment seems to be - "you'll feel better eventually" - and while the pain is dissipating the fatigue and exercise intolerance is overwhelming. Any suggestions on how I can get back to where I was? I am 55. I was experiencing overall pain that seemed to be focused on my joints and this went on for some time. Over the course of a year I had a substantial loss of muscle strength and mass. Because I began having back problems and nerve problems in my leg that prevented me from doing much of what I had been doing previously this progressed to a great degree before I realized how bad it had gotten. At first I believed it was a lack of exercise. I received cortisone injections in my back that relieved much of the pain in my back and leg and allowed me to engage in my previous activities again. Once I was able to be more active, the weakness became more obvious. My increased activity though didn't improve my muscle tone, in fact, over the next months, in continued to decline at an alarming rate. As the cortisone wore off, the pain returned - again all over - with muscle cramping and muscle pain as well as joint pain. It took my doctor a long time to recognize this as statin induced myopathy. I read the statins 101 article but I think that this side affect may be under reported and under treated. In someone who is elderly this could easily be written off as aging. Also you might want to look at the news item from July 21 that talks about how muscle biopsies show muscle damage in statin myopathy with normal or slightly elavated CPK levels. Paste this web site to read. www.ukmicentral.nhs.uk/headline/database/story.asp?offset=10&NewsID=7699
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bobby75703 responded:
Ituk, I agree with you 100%. Case history does show us that statin myopathy can co-exist with normal CPK levels. And I would agree that statin induced myopathy may be under reported.

To the best of my knowledge, there is no magic bullet to correct statin induced myopathy. This is a relatively new problem since statins were introduced in 1987. Most people get better right after stopping the statin, however thats not the case for everyone. Some experience a gradual improvement over the course of a year or more. Others experience partial recovery while a select few suffer permanant damage.

While there is no magic bullet, some people have reported improvement taking large doses of CoQ10. Statins deplete this enzyme from the muscles. CoQ10 is needed for the production of ATP which gives us energy. The highest levels of CoQ10 are concentrated in the heart muscle.

Some patients have reported loss of libido with statins. Steroid hormones are made from cholesterol. The Human body uses cholesterol thru a chain of processes forms testosterone. Testosterone is then converted into estrogens. Low levels of testosterone can fatigue muscles. Some people have reported their steroid hormones levels in the basement after statin therapy. You might want to explore this with your doctor since these hormones are critical in maintaining muscle tone.

Cholesterol itself plays an important role in muscle cell integrity. LDL carries cholesterol from the liver to the body. Once on the job site, cholesterol goes to work repairing existing cells and helping build healthy new cells. It also helps form the fatty insulating layer on our nerves called the myelin sheath.

A muscle biopsy would give more information if you don't experience recovery. In the meantime you may find the following link helpful. This doctor has devoted the last 10 years of his life to studying side effects from statins. spacedoc.net

Hope this helps,

Bobby
 
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ltuk responded:
Bobby,

Thanks for your reply. I saw the space doc web site in my search for answers on the web and so far the CoQ10 is all I have come up with as well. I am simply stunned at the damage and disability that this drug caused - I guess I should be happy it was caught when it was - I was beginning to think I might have lupus or MS or some other equally scary disease!

I just think that this Dr. Richman is taking a very cavalier aditude toward what is a serious and under treated side effect. I can't believe he is saying that if you have muscle pain and your CK levels aren't 10x normal ( 10x !!!) you don't have a problem. I don't think you could convince me to take a statin again after this unless you put a gun to my head! I can't lift a 30lb bag of dog food out of my car any more - I have to ask for help! I can't golf 9 holes - with a cart! - I get too tired! I don't know what my CK levels are and don't think I care - I will never take a statin again - it is clearly a poison to me. If I cannot control my cholesterol with diet and exercise - oh wait - I can no longer exercise - I guess we will have to come up with another answer.

My doctor ordered a CK blood test - I will call and get the results and I will ask about the CoQ10 - at least it shouldn't hurt.

Doctors should NOT be ignoring this - what is the oath they take? Do no harm? Let me think - I wasn't sick, now I can't unload my groceries...

Okay, I'm angry. I'm sure this was not the intention, but really, they need to be aware and they need to understand that it happens maybe with more frequency than we are led to believe or at least to be careful about it.

Thanks, ltuk
 
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bobby75703 responded:
ituk,

Odds are you will get better over the course of time. You are not alone in this. Others are experiencing the same thing as you with statins. There are support groups for people trying to recover from statins. One is titled "Stopped Our Statins" and another is a yahoo group called "Taking Lipitor and Hate it!" You can communicate with others in the same boat as you who have been thru it and have already recovered.

Hang in there.

Bobby
 
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texas98 responded:
Oh my God! this is what I am going through right now. I hope you are doing better. I know your posting was from 2 years ago...tell me there is some hope? I stopped taking the statin 2/25/11 and same treatment and the pain returns with the exhaustion. I began walking slowing around the block but now my feet go numb! I have lost some muscle and the doctor continues to tell me soon I will be ok?? I am 62 in numbers but feel 50 in mind and spirit...
 
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aquariusanne replied to texas98's response:
I took 10mg lipitor and zetia every other day in 2006 and had a horrible attack while on vacation after walking for 4 hours. My head buzzed so bad and then I was very sick to my stomach and could not function properly. Came home and my urine had turned brown, muscles ached in my legs and when I went to the doctor, he was very upset when he saw my blood test. Sent me through all kinds of tests and nothing showed up. After all this time, I have not been able to breathe properly (shortness of breath) and went to emergency to find my lungs look like shattered glass! It is over a year of prednisone and off of it and still the shortness of breath....and leg muscle pain. Will have a CT Scan again to see if the lung problem back again. Doctor said he does not know what caused this...I think it is from the lipitor. Anyone else have this kind of problem?
Thanks for reading....aquariusanne
 
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bobby75703 replied to aquariusanne's response:
Yes, others have had this problem with dark tea colored urine when taking statins. Brown urine is a sign of muscle breakdown. This is well documented in the medical literature with statins. Your physician can take continuing medical education (CME) to update himself with statins and their side effects.

Honestly I think your doctor does know what caused this. They are not stupid. They are well educated. Its just sometimes hard to own up to it.
 
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toneman84084 replied to bobby75703's response:
The incidence rate for Rhabdomyolysis, or the breakdown of muscle, due to statin use is .001% of users. It is far more likely that there is an other underlying cause as there are many. It may be statin use, but that would be extremely rare. I would not be too quick to write it off as statin use when there may be a more serious health concern out there. The thought that your doctor " does know what caused this" and is not telling you is just not realistic, a scare tactic and nothing more. Bobby, this is the exact opposite of what you have stated many times, doctors are uninformed dupes that do not know the facts, you make whichever statement furthers your statement. I would definitely trust an educated medical professional that has gone through 4 years of college, 4 years of medical school and a couple years of residency over anything we post on the Internet. Do the research and consider all the data so you can make an informed decision.

This link may help, good luck.

http://www.rhabdomyolysis.net/causes.php
 
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Sir_Porangi replied to aquariusanne's response:
I was wreaked in pain from head to toe. I started peeing smelly green gunk, my arms and legs were so weak it was very painful to lift a 2 litre bottle of milk, this is from a physical tradesman who prior to commencing statins was swimming an absolute minimum of 20ks a month.

Several of our friends have all suffered cruelly since starting statins.
 
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Sir_Porangi replied to toneman84084's response:
The incidence rate for Rhabdomyolysis, or the breakdown of muscle, due to statin use is .001% of users




This statement would be believed by every sensible person on the planet if every person was sensibly advised, monitored and had there adverse effects factually entered into an honest database.
 
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Sir_Porangi replied to ltuk's response:
" I am simply stunned at the damage and disability that this drug caused "


I've just visited an aged care rest home. You just have to see the difference in the poor old folk taking 10 to 20 pills a day compared to those taking no pills. Three of these wonderful people in their golden years with ankles swollen like tennis balls. Their doctor had told them that is a side effect of their medicines. A lovely 93 yr old lady on statins needing 2 sleeping pills a night - official reported known side effect of statins - sleep disturbances. As a society we should be absolutely ashamed of ourselves.
 
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toneman84084 replied to Sir_Porangi's response:
Sorry you don't agree with this statement, but it is true. You are using the same mantra of the anti-drug company group. You need to understand where these numbers come from. They will never be taken from sites that collect data on adverse side effects because they have been proven to have false data given by those who are against a certain drug to overstate the numbers.

So where do they come from? Do you know how these are calculated? It is the result of follow up with participants who were part of the trials for an extensive period going forward. For instance, they are still monitoring the 18 thousand participants from JUPITER and adjusting the numbers for the ACTUAL side effects that are reported. This process is monitored by the NIH for accuracy before anything can be published.

Just the facts, take the emotion out of it.
 
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Sir_Porangi replied to toneman84084's response:
All new aircraft are vigoursly tested before entering into service, after they enter into service every minute of flying is recorded and safety is strictly monitored.

When a new drug is entered into service many one eyed people will only refer back to the drug trial testing data, they refuse to believe adverse effects reported by the public.
When a drug is in the public market place it is essentially in a colossal drug trial which is no longer monitored by doctors and scientists, rather it is then monitored by profit driven and regretfully sometimes convicted fraudsters.

The airline makers actively want to hear of any news good or bad as they service their aircraft for fuel costs and safety.

The drug manufacturers refuse to conduct their business in the same safe trust worthy manner as the airlines.

Very sad and cruel for society.
 
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toneman84084 replied to Sir_Porangi's response:
When a drug is in the public market place it is essentially in a colossal drug trial which is no longer monitored by doctors and scientists, rather it is then monitored by profit driven and regretfully sometimes convicted fraudsters.

It is clear this is what you believe, but please show me something to back this up. I know for a fact that trial participants are followed for years to determine the long term effects of a drug. Some fail miserably and are pulled from the market even though the original trial was successful. Don't show me anything from spacedoc.net as it is a one sided anti-statin website that has little to no respect from the medical community. The Federal Government determines what is communicated to the public, not the drug makers, the NIH controls all research data and it's application.

Your comparison does not really work in this situation, but I appreciate your opinion.
 
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Sir_Porangi replied to toneman84084's response:
The comparison works with absolute preciseness, when an aircraft has a hiccup no matter how small the hiccup is looked at with absolute integrity.

When a patient presents to a doctor with problems after commencing statin medication every possible problem is explored except the causitve agent.

Spacedoc is clearly in part an anti statin but it is also a quality news bulletin board like WebMD.

Spacedoc like WebMD offers sensible free advice from fully qualified and highly respected, experienced doctors and cardiologists.

Spacedoc in 1000's of peoples opinion is a tremendous support group for prescription medicine poisoned victims who like myself and my family were unable to get help elsewhere.


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