From the site, Petitiononline.com (see link below) today's somewhat unusual post is a direct copy of a neuropathy patient-sponsored, petition to the pharmaceutical researchers and manufacturers of America with the aim of reducing the harm done by Statins. It's nice to see neuropathy sufferers actively campaigning to make a difference. Whether this sort of action is successful or not, remains to be seen but the drug companies must take some responsibility for this sort of severe side effect and ensure it is not wrongly prescribed, especially when the evidence is indisputable.
After the petition below, is one person's experience of Statins from neurotalk.psychcentral.com (see link below). It illustrates powerfully why this sort of petition can be necessary to remind the drug companies that they're dealing with people and not lab rats and dollar signs.
Peripheral Neuropathy Caused by Statinshttp://www.petitiononline.com/Statins/petition.html
Send To:
Pharmaceutical Researchers and Manufacturers of America and companies listed
Sponsored By:
DrugIntel Statin Users with Neuropathy
Peripheral Neuropathy Caused by Statins
We users of statin drugs have experienced some of the symptoms listed below [1] that characterize peripheral neuropathy (damage to nerves outside the brain). Medical research published in peer-reviewed journals has shown that statins are able to cause peripheral neuropathy or a syndrome that is very similar to it.
We petition the pharmaceutical manufacturers of statins [2] to:
1. Notify patients (past, current, and prospective users of statins) and healthcare professionals (physicians, pharmacists, nurses, physicians' assistants) of the risk associated with statin use and what to do once the first signs and symptoms of neuropathy have appeared.
2. Sponsor and perform research on how statins cause neuropathy.
3. Sponsor and perform clinical research on how to cure and reverse the neuropathy caused by statins.
4. Perform clinical research and recommend the best drug treatments to mitigate the pain and make other symptoms of statin-induced neuropathy more tolerable.
5. Proactively offer reparation to statin users who have suffered neuropathy.
Knowing our rights to patient confidentiality and privacy, we users of statins agree that our medical condition and other information we furnish here may be divulged sufficiently to represent our need for treatment and restitution. The information we supply may be used by the petition organizers to achieve these five objectives.
Further information and updates on the petition: http://www.drugintel.com/drugs/statins/petition_statin_neuropathy.htm
[1] Symptoms of peripheral nerve damage (neuropathy):
Weakness, usually in the arms and hands or legs and feet
Facial weakness
Difficulty walking
Difficulty using the arms and hands or legs and feet
Sensation changes (usually of the arms and hands or legs and feet)
Pain, burning, tingling, or other abnormal sensations
Numbness or decreased sensation
Additional symptoms that may be associated with this disease:
Swallowing difficulty
Speech impairment
Loss of function or feeling in the muscles
Muscle contractions
Muscle atrophy
Uncoordinated movement
Dysfunctional movement
Joint pain
Hoarseness or changing voice
Fatigue
Facial paralysis
Eyelid drooping
Bowel or bladder dysfunction
Breathing difficulty
From the National Institutes of Health (NIH) National Library of Medicine (NLM) MEDLINEplus Medical Encyclopedia.
[2] Statins and their manufacturers:
Pravachol (prevastatin): Bristol-Myers Squibb
Mevacor (lovastatin): Merck
Zocor (simvastatin): Merck
Lescol (fluvastatin): Novartis
Lipitor (atorvastatin): Parke-Davis
Baycol (cerivastatin): Bayer
Crestor (rosuvastatin): Astra-Zeneca
Advicor (lovastatin + niacin): Kos Pharmaceutical
The petition will be presented to the Pharmaceutical Researchers and Manufactuers Association and to the Medical Affairs Departments of the companies listed, as well as any additional companies that may be identified as relevant over time.
_________________________________________________________________
When researching information on peripheral neuropathy I found this information:
by Moaningminnie
“For susceptible individuals, the use of a statin drug can interfere with proper functioning of peripheral nerves. Researchers assume that the build-up of statins in the body causes neuropathy in some individuals. If left undiagnosed, neuropathy can lead to deterioration of the muscles and paralysis. This can lead to problems swallowing, breathing, and complications of the heart – as these all involve muscle groups. In the extreme case, severe neuropathy as a side-effect to statin use can lead to death.”
I took Lipitor/statins for two years and suffered a life-threatening adverse drug reaction last year. I was told to stop the drug after a blood test showed my cholesterol level had gone down dangerously low to 4.mmol/L. I first reported a horrendous pain and pricking sensations in the upper back, could hardly talk, felt 'nervy' and had difficulty writing. I checked these symptoms on the internet and found 'statins and ALS-like syndrome' which fitted my symptoms. But I now believe these symptoms are autonomic and peripheral neuropathies caused by the statin drug which are very similar to the 'ALS-like syndrome' description. So perhaps the label 'ALS-like syndrome' is wrong and the correct diagnosis is actually peripheral neuropathy. There is an on-line petition to the pharmaceutical companies from hundreds of people who have suffered peripheral neuropathy caused by Lipitor/statins. Dr Ralph Edwards, Director of the Drug Monitoring Centre of the World Health Organisation has been carrying out research on hundreds of serious reported cases of 'ALS-like syndrome' caused by statins but I believe the correct diagnosis is peripheral neuropathy - a very frightening, disabling disease caused by many other drugs as well. I almost died of cardiomyopathy and neuropathy as a result of the statin-induced toxic/chemical poisoning but was never admitted to hospital/intensive care for investigations and treatment and have been left with irreversible damage. The GPs and hospital doctors concerned are in denial refusing to admit that the statins have done this and have refused proper investigations and treatment that could have reversed the damage. I read my medical records recently and discovered record tampering to cover-up the medical disaster and have been struck off two GPs registers because of it. In the referral letters they said I was on the drug for three months (to deliberately mislead) when I was on it for two years. The GP who prescribed the statins refused to report the emergency ADR to the MHRA so their statistics are grossly unreliable. I was housebound and extremely ill for four months and on a home visit the GP refused to authorise an ambulance to take me to hospital. I have reported the malpractice and sub-standard healthcare to the appropriate health authorities. I have read about adult stem cell treatment that may be able to treat the muscle wasting and blood vessel damage which seems to be the only hope of a possible cure? One clinic said they hear many statin horror stories like mine and have treated patients successfully with these conditions. Lipitor/statins is an extremely dangerous drug and Pfizer should be forced to withdraw it from the market immediately. It is a fraud and those responsible are putting profit/greed before patient safety. Statins don't save lives - it severely harms and kills thousands of patients around the world. It is a 'disease' invented by the pharmaceutical companies and the medical establishment is in cahoots with this money spinning sham. I never had any heart problems before I took statins and it has been a horrific experience. It's a terrible state of affairs, and very scary indeed, when I can't trust my own doctors now to tell me the truth and care for me. No wonder people who've been on statins have suicidal thoughts.
http://neurotalk.psychcentral.com/archive/index.php/t-91739.html
I also had permanent side effect from statin drugs, which I brought to the attention of my physician when they started. She was not informed and said she never heard of those side effects, and she gave me splint for wrist pain, telling me it would delay the need for carpel tunnel surgery. I told her I never had carpel tunnel and did not have it. It was terribly painful to turn a door knob to open a door.
ReplyDeleteAfter my urine turned dark color and had a sort of musty odor, I quit taking Mevacor. The wrist pain went away but the foot pain has persisted changing my life dramantically. The more I walk the more painful my feet are, especially at night. Now I need to take Lyrica and Amitriptyline, for pain, which is expensive and zones me out, and I just want to sleep. My weight has increased party due to the inactivity of the neuropathy and side effect of the pain medications.
The Internet finally has lot of information about the side effects of the statin drugs, but one needs to use the right search words, and if a person has not yet realized the risk of peripheral neuropathy, and rabdomylosis, they will not find it.
There are a couple of other articles here on the blog about Statins and neuropathy if you're interested (under 'S' in the alpahebtical list on the right).
DeleteSo sorry to hear about your own situation - there's really no excuse for doctors not knowing about the danger of neuropathy with Statins - it's pretty well-known. That said, what's done is done - hopefully you can manage your symptoms reasonably successfully. It may be wise to do your own research as well as talking to the doctors in the future - there are various possibilities for keeping the symptoms under control - some more successful than others.