Myopathies

[kkolk]

After 2 months of taking Simvastatin, I began experiencing severe tiredness and depression This was explained to my cardiologist and in return I was told this is a normal adjustment period to the drug and that it should go away with time. However, he switched the drug to an evening dose and kept me on the drug. 6 months ago, 2 years into my treatment on Simvastatin I began experiencing extreme muscle pain in the night that eventually carried over into the day. I was hospitalized with test after test, exhausting all possible causes, neck, back, leg, head, neurology all came back negative there was nothing wrong. I was released from the hospital on heavy doses of pain and muscle relaxers.. this seems to be the only way to get out of the house and back to work.

Desperate, I started researching on my own after discovering a web site, I took the paperwork to the doctors office. Was it possible that this drug caused this level of pain? I was in a wheel chair for most of the christmas holiday season. I stopped taking Simvastatin on 12/22/07, slowly my pain levels have dropped but not significantly. I am in such severe pain on a regular basis, my PC was treating the pain, stating that it should eventually go away. I am able to walk these days with a cane but the pain is still unreal. I thought as did my PC that the pain would stop almost immediately after stopping Simvastatin? There has been some evidence of improvement but not much, my pain levels range from a 7-9 in the morning and a 3-5 in the evening. There are some mornings that I have difficulty just getting out of bed.

Yesterday my PC basically told me that it was time to seek a second opionion, he would no longer be treating the pain, Im starting to think he doesn't believe this pain level I am having.

I don't know where to turn? I don't know what type of doctor would have experience with these types of reactions.

Please can you help me... I live in the Northern Suburbs of Chicago. Is there someone that you might be able to refer me to that can help that has experience with Drug Induced Myopathy.

[jmbatgirl]

Hello -

I know how difficult it is getting help with these sorts of problems. My doctor checked to see if I was on statins when they were trying to rule out my problems, which I wasn't. Since you're around Chicago, you might want to try the neurology clinics at one of the medical schools. They tend to be more up to date on research and the latest tests and treatments. In my experience, they are not any more expensive than a local neurologist, and you often get the benefit of having several physicians' opinion. I think you probably need a neuromuscular specialist.


Best wishes.

[gott1936]

As a victim of statin poisoning I can say there is no cure for statin drug side effects unless you have been on a statin drug for a very short period of time. I was on a statin drug for 13 months.

[blueskys41]

Hi, In your post you did not mention if you had MRI's? Not to alarm you but you might want to have a MRI of your brain. I am suffering from many of the symptoms you have listed. I was diagnosised with a Pituitary Adenoma (small tumor on the pituitary gland in my brain)(It's treatable and usually non cancerous) This has affected the way hormones signals are transmitted to my entire body. I believe all of this was caused by long term Steroid injections I have been recieveing over the course of the last 2 years. Blueskys41

[kkolk]

Yes had several MRI's and CT's an actual muscle biopsy recently confirmed the diagnosis of STATIN INDUCED myopathy. Meaning the Cholesterol lowering drug I was taking has basically left me all but handicapped. Wondering whats going to come next. Im told it's not over just because you stop taking the medication it can still cause further damage. Thats what Im dealing with now. Thanks for the post .

[gott1936]

kkolk, join the growing crowd. I was on Lovastatin for about nine months and now, two years later, I am still in pain. I walk five time a week for my heart, but the walking is extremely painful. Statin drugs in some individuals damage the mitochrondial pathway and once this happens your muscles are never the same. Maybe the medical profession with discover a cure for the muscle damage caused by statin drugs. If you believe in the tooth fairy or that most doctors really give a damn a cure maybe in the cards. Of course, if you don't play cards your in trouble.

[blueskys41]

Im sorry, but I have to agree with you. Unfortunately due to legal issues we can not get the proper medical help! I feel Doctors "bury" their mistakes! I constantly complained to my doctors and reported all side effects. They could not explain why I was still having severe pain and they did not refer me to other doctors for treatment. I had to be my own advocate and find out what was causing the severe pain I was experiencing. I started searching for doctors after reading about steroid abuse and and side effects of steroids on the internet. I had almost every symptom listed. I took it upon myself to be my own doctor because I was not getting the medical help I needed. I do not know what to do now. I have discovered what is causing all the medical problems (brain tumor) and trying to get help/treatment. I am on workers compensation with limited funds and workers compensation will not recognize/pay for side effects from the (approved) steroid treatments of my original injurries. I thank God I was strong enough to get on the computer and search for help. At least I know now and can try to get help when I can afford to go to the proper doctors. I pitty all of us having to suffer because physicians not know the side effects of their treatments or worried about law suits and covering up in order not to be sued. I feel they have left me to die. Solves their problems!

[gott1936]

Doctors know the side effects of all the medications they prescribe, but if they have 100 patients and only 5 patients experience side effects or die than they believe, at least, that they have saved 95 patients and the 5 dead patients are just collateral damage and par for the course. It is something patients and doctors have to live with, unfortunately.

[jbark]

TO EVERYONE IN THIS FORUM WITH STATIN INDUCED PAIN. GOTTI1936 MAY BE RIGHT THAT THERE IS NO CURE. I'VE HAD LEG PAIN FOR 15 YEARS AND HAVE HAD ALL THE STANDARD TESTS, AND BEEN HANDED OFF TO OTHER DOCTORS, ETC. I HOPE GOTTI1936 IS WRONG, BUT IN ALL MY RESEARCH I HAVEN'T FOUND A CURE. I MAKE IT THROUGH THE DAY ON PAIN MEDS. ONE MD TOLD ME FLAT OUT THAT I WOULD BE LIVING WITH PAIN REST OF MY LIFE.

BUT, THERE IS ONE DOCTOR. DR. DUANE GRAVELINE, WHO WAS A NASA SURGEON AND WAS GIVEN STATINS ALONG WITH ALL THE ASTRONAUTS AS A PREVENATIVE MED (TO KEEP THEM HEALTHY)
ANYWAY the statins gave him problems and now he's retired and has dedicated himself to fight and educate people about the 'statin curse' CHECK OUT HIS SITE AT spacedoc.net. He has brought other Dr's in on this and has written 2 or 3 books about it. I'm not promoting him in any way. I found him during research online, and have never read his books, but I'm seriousely thinking about getting one. I do get a newsletter from him each week, just to stay up-to-date. Good Luck to us all and I'd be glad to correspond with anyone who is having un-explained pain.

John Barker

[gott1936]

John,
I have read all of Dr. Graveline's books. His latest book tells it like it is!
Quote: " I had long wondered why muscle and nerve damage seemed permanent and even progressive like my own ALS-like condition. " Get his latest book. ( The Statin Damage Crisis ).

Gotts1936