Myopathies

[cjbrooksjc]

I turned 65 this July 28. Five years ago I had, and used weekly, a fitness club membership. I went Kayaking, camping, fishing, walking, played volleyball, and hosted/attended a variety of writing/poetry venues. When I was 60, my PCP got a borderline high cholesterol result from my blood work and put me on a 20Mg maintenance dose of Lipitor. I trusted; I took it. In six months I had such severe acid reflux the Rx was switched to Zocor 20 Mg. Within six to eight months following the switch to Zocor I felt a heaviness in my legs, was getting tired frequently and had lost my vigor for and interest in any social activities or writing venues. My cholesterol rose slightly again in a few months and my Rx was bumped to 40 Mg of Zocor; now the fun began in earnest. I began to perspire at the slightest exertion and could not stop perspiring even when I stopped exerting myself; I literally dripped with sweat. I perspired so much at night I would wrap my pillow with towels. At the same time I developed a night thirst that was disturbing in its intensity. I began keeping water by my bed and gradually drank at least a twenty two oz. bottle during the night, every night, and began to pass copious amounts urine each night as well. I could only sleep in two hour stretches, awakened by cough, thirst, a need to urinate, or a deep sense of foreboding accompanied by rapid heart beat and palpitations. My eyes crusted over during the night so badly I often needed to soak them with a damp cloth before I could open them. I was also experiencing dyspnea, a shortness of breath, especially when I lay down to sleep, and my legs twitched uncontrollably. I had eye-popping fits of coughing that often climaxed with vomiting. I seemed unusually susceptible to viral infections and caught colds easily. These colds always became something more serious and twice resulted in my being treated for Viral Pneumonia I also experienced a painful bout of severe stomach flu that lasted for a week; something I have never had before and hope never to have again. During the day and night I was treated to breath-taking episodes of cramping, in my feet, hands, calves, stomach, neck, and back . My arms and legs next began to burn and ache and occasionally would pain me sharply. My hips and feet hurt so much that walking became a chore; stairs an obstacle to be overcome; I walked like a ninety-year-old. The exhaustion was growing debilitating, and though I kept complaining, my PCP could not determine what was wrong with me. I was now sleeping much of the day and couldn’t keep up with simple chores around the house. I began losing my train of thought or the thread of a conversation and would avoid engaging in conversation If I could. My memory was getting spotty and words I knew were in my vocabulary simply were not to be found in my mind. An avid crossworder, I was accustomed to speeding through at least the Thursday, New York Times crossword puzzle. At my worst during this ordeal, I could get through Monday, maybe, and Tuesday, if I worked on it all day. It was so frustrating to feel so damned diminished when I knew myself capable of so much more. I became irascible and withdrawn. Next, my skin began to grow dry and scaly; the underbelly of my forearms looked like crepe paper. My hair turned dry and brittle and began to thin at an alarming rate, I grew bumps on my forehead and scalp; skin tags began to appear around my neck and on my abdomen. I developed eczema on my face and cold sores in my mouth, and, much to my horror, I ballooned from 212 lbs to 252 lbs.
My PCP diagnosed ‘tennis elbow’ for my painful arms, and I underwent five or six agonizing sessions of ointments and therapeutic massage. I was then sent to a sleep center and diagnosed with Apnea. I declined the contraption that went with the diagnosis; I knew I was suffering from something other than Apnea, but what?
Finally my PCP recommended a full body MRI Now, totally frustrated, I went “out-of-network” to a D.O. Physician my family have known and trusted for years. I described my problems to her, and one of her first questions was: “Are you taking any cholesterol medication?” I outlined my Rx regimen, and she, using a physician’s desk reference, explained the side effects of Statin drugs. Now, I had never heard of Statin drugs, didn’t know I was taking a Statin drug, and was astounded, based on my symptoms and what I was reading, that I had been mis-diagnosed for so long. She ran a magnesium absorption test on me and I failed miserably. I took magnesium shots for two months and began to improve slowly, and I repeat, slowly.
I engaged a Cardiologist Dr. Peter Langsjoen, who, following heart echo and EKG exams, determined I had heart impairment consistent with Statin poisoning. I am now sixteen months off all Statins and have, for the past year, been taking CoQ10, Alpha Lipoic Acid, Acetyl L-Carnitine, B6, B12, Folic Acid, Omega 3 Fish Oil, Vitamin C, Vitamin E, etc., etc., to (hopefully) reverse the damaging effects of the Statin drugs. Every day I notice little improvements, but I am by no means 100%. However... today, I know exactly what Statin drugs are, how they inhibit CoA reductase in the liver by restricting the same productive enzyme mevalonate pathway (CPY3A4) used to supply CoQ10 (an absolutely essential amino acid required for proper function by the mitochondria in every cell of our bodies), HEME, and Dolichols, and how this is hurting us. I’m no longer a ‘trusting soul’, I am still unwell, and I am very determined to make these dangers known.
Ultimately; on balance, I am not saying there is NO viable application for Statin drugs, only that, notwithstanding any “dirty dollar” motivations, there has been a total breakdown in the dissemination of accurate information from the manufacturer - to the pharmacist - to the doctor, and finally - to the patient concerning the safe and reasonable dispersal and application of these medicines, and as a result they are injuring, even killing people, and no one is taking responsibility!

[wenbuno]

You may be interested in reading an article in the July 2008 issue of Discover Magazine. "Medicines
Magic Bullets? We trust today's miracle cures, but some have caused great harm. Who is to blame?
My husband took himself off Zocor and has some of the problems you've described....the night
sweats, the trips to the bathroom, the terrible muscle weakness.
Our neighbor took herself off of Lipitor with almost no problems but she's been on it a shorter
period of time (2 years) Her doctor, off the record, recommended Red Yeast Rice extract which
she is now taking. There's a study out of China done with 5,000 patients and published in June of this year on the Red Yeast Rice extract. It's not without some dangers, also. You can find it on
the internet.
I have quit taking Pravastatin within the last 30 days and only have an occasional day of feeling rotten.
The bones in my arms hurt, my collarbone hurbs, my rib cage hurts but all in all, it's mild compared to my husband's problems. He is 86 and I am 74.
I have turned to my acupuncturist for help and take Chinese herbal medicine that he recommends.
I haven't seen the term statin poisoning before. Also, we are taking many of the vitamins that you
mentioned. Good luck in getting thru all this and out the other end.
I have no intention of telling my husband that you have suffered 18 months since he is so susceptible
to suggestion.
Our HMO doctor was not distressed that he quit the Zocor and suggested that he wait 3 months for
a blood test to check his cholesterol levels, etc. We thought her approach was logical since he
had been urged to stay on zocor about two years ago when he wanted to stop taking it.

[gott1936]

I am a victim of statin ( Lovastatin ) poisoning. I have been off Lovastatin for,almost, two years without any improvement. The reason is that my leg muscles have, almost, wasted away. The calf muscle in my left leg is half the size of the calf muscle in my left leg. My legs hurt when I sit down and when I get up. If I spend more than 30 minutes standing or walking my leg muscles hurt like hell. I am 72 years old and was healthy before taking Lovastatin. The problem we have is that Doctors are not reporting the side effects of statin drug to the FDA. Statin drugs can severely damaged the mitochondrial pathway and, todate, there is no cure.

[gott1936]

Oops, I mean my left leg calf muscle is half the size of my RIGHT leg calf muscle. Sorry!