The Legacy Effects of Statins: A Role for RxISK

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March 1, 2013 | 26 Comments


  1. Thanks so much for this incredible yet all too familiar story of ongoing statin harm. We all hope that these stories of lived experiences will push the research, medical and insurance establishment to reverse their embrace of the official story that “so safe they should be in the drinking water.” In the mean time, peer support of the kind offered on this site is essential.
    We are all tired of hearing that our harms are rare…that with discontinuation, our impairments will just simply go away.
    Recently, a Cochrane Review (update 2013) of statins for primary prevention stated that “the totality of evidence now supports statins for primary prevention” finding little harm and great benefit for men and women based almost entirely on data coming from commercially sponsored trials.
    This claim to the “totality of evidence” is a chilling reminder of what we are up against. Even people, presumably of good will, can be trapped inside a way of thinking that excludes everything but the clinical trial as evidence. This narrow vision can persist despite a mountain of research about statin-associated muscle, cognitive, diabetes, kidney problems and birth defects which rarely show up in carefully selected and unrepresentative clinical trial populations.
    The RXISK site provides an important antidote to the tunnel vision of “totality of evidence” and meaningful support for patient safety.

  2. My husband, now 68, took statins for 8 years following CABGx4 at age 52. His father passed at age 63 (possibly due to a heart attack) so going forward we were more aware of any family history that would predispose him to a similar fate. My husband was a “runner” and when it seemed to take more effort to maintain his regime, we became concerned and made an appointment with a cardiologist. A stress test indicated a blockage know as the “widow maker”… bypass surgery was immediately scheduled. Either your husband has this surgery or “he will die”… not much of an option there… post op medications were statins and blood pressure drugs.

    He was otherwise a very active, healthy male, both physically and mentally. After bypass surgery he could no longer jog/run due to muscle pain which was always present, only to be told by his doctors that the benefit of statins far outweighed any discomfort he was experiencing. He also experienced visual disturbances, erectile dysfunction, unexplained anger, insomnia and towards the latter part of the 8 years on statins (1st Zocor, then Lipitor) his memory and executive function were diminishing. All of these his doctors said were “age related”…

    I discovered a link between Lipitor and memory loss (and other statin side effects) from research by Dr Duane Graveline, his first book, “Lipitor – Thief of Memory and the Misguided War on Cholesterol”. There was absolutely no support from our doctors with information that statins could be the culprit. We decided on our own to stop statins, but what to do next? There was little or no information available at that time to help guide us.

    We were referred to a neurologist. PET scan and MRI were normal. Neuro-psych testing indicated early stages of Alzheimer’s. It was recommended that he start taking Aricept and resume taking Lipitor. We said NO to both.

    My husband’s statin side effects started to improve, especially memory and muscle pain after stopping statins, but not for long. His executive function was hampering everyday activities that AGAIN, doctors said was due to aging.

    I’ve researched extensively for the past 10 years in an effort to help my husband recover, but his health has steadily declined to the point that now he is completely bedridden, with what I feel is mitochondrial damage from statins, presenting as dementia and Parkinson’s. He also experienced a grand mal seizure in Aug, 2009.

    We were receiving “hospice at home” for 1 year and 4 months, but just discharged due to “there’s been no change in his CONDITION for the past 2 months”, an ongoing requirement to stay in the program. Friends and family will help until his condition changes…

    I mange a support group for those experiencing statin side effects, host a website and have a presence on Facebook. My goal is to provide information so that people can make an “informed” decision to either take or not take a statin drug.

    Statins are literally pushed on almost every person that enters a doctors office and when side effects occur, reporting is almost non-existent, they are usually switched to another statin until the patient finally says, “no more”!

    Stopping a statin does not always resolve side effects and most doctors are either not willing for their patients to stop or know how to treat unresolved side effects.

    The ironic “twist” is that “sugar” (and simple carbs) is the primary culprit in one developing heart disease and NOT by consuming good healthy saturated fats and cholesterol. “People” (involvement of) are the only way of holding both the food industry and the drug companies accountable for misinformation that’s been repeatedly regurgitated for eons… That eating fat and cholesterol “clogs our arteries”… absolute hog wash! Another theory is “bacterial” infections as one of the causes of heart disease.

    Do your research and take control of your own health.

  3. I really feel for Brian and his wife. I know all to well the frustration and sheer exhaustion that comes with fighting our Accident Compensation Corporation. My case manager has been excellent, but she is but one cog in the wheels of bureaucracy. I tend to agree that ACC and CARM do not seem to be doing their part in accident prevention by making such adverse events more widely known among the front line prescribers, GPs. It is they who often prescribe in ignorance of emerging adverse event data, they who so often feel the brunt of patients’ and families’ anger when things so seriously wrong. I’m waiting for the day (and I suspect it’s not too far away) when my entitlements are suspended, despite my multple and ongoing neurological impairments. The frequent assessments, having to pore over every detail of one’s condition and clinical history, are exhausting and often demeaning. There seems to be a (publicly) unwritten rule at ACC that after three years, you’re on your own. I live in constant fear of that day.

  4. Dear Gillian — Well it looks like Enbrel is the Number One Most Complained-of Drug according to FDA figures for 2004-2012! 143,696 reports. So you can’t be that much of an oddball. The Number Two drug is Enbrel’s close competitor and chemical cousin, Humira. Come to think of it, three of the top five drugs on that list are “tumor necrosis factor inhibitors.”

    These are incredibly profitable drugs — they cost from $1500 to $2500 per month in the US. I know that Abbott Labs has just about bet the future of its whole pharmaceutical division on Humira. So the pressure to use them for less-drastic physical conditions, where the risks may outweigh the benefits, is growing. I just read a big article on a commercial health-info website which said the modern trend was to use them as soon as possible for “moderate” and “newly-diagnosed” rheumatoid arthritis. And Humira has sponsored radio ads, urging folks with back pain to go get checked for Ankylosing Spondylitis.

    So while I don’t yet know anyone taking this stuff, I figure it’s coming soon to a clinic near me …

  5. Simvastatin is the drug that I took until I couldn’t walk at all. After being off the drug, I can walk very slowly but with much pain. I was also put on the drug because of family history. This past summer I was in for several tests including angioplasty and it showed no clogging of the arteries at all but the damage to my legs and upper arms is permanent. I warn everyone I know that takes statins to beware.

    • all of us are riding the same boat. statins destroyed my body and all my doctors deny, but i know what they have done to me. i will be waiting for them on the other side to see what judgement is handed to them by GOD.

  6. I was a 29 year old Critical Care Registered Nurse, when I agreed to begin taking Lipitor…I had high cholesterol since I had a physical exam while in nursing school 10 years before, and probably my whole life. As an RN, I “knew” everything there was to know about these drugs, or so I thought. until 3 and 1/2 years later, I fell deathly ill, profound headaches and fatigue which kept me in bed up to 17 hours/day. and when I was awake, was extremely lethargic, disoriented, and confused. This occurred periodically for about 8 weeks. Upon exam in the Emergency room on 2 occasions, where I was released both times with a diagnosis of “migraine”…sorry, never had a headache in my life before this…my wife demanded they do an MRI, which was declined. When we got home the second visit, my wife called my doc, and requested an MRI scan, to which he agreed…which found multiple scattered lesions through the white and gray mater of my brain. Initial impression, was Multiple Sclerosis…I followed up with an MS specialist at the University hospital, who told me that they did not think I had MS, but they could not place a definitive diagnosis on my problems. I was to recheck there in 6 weeks. Over the course of the next few weeks, my symptoms worsened. My wife found me in the middle of the night, digging thru the kitchen garbage, and when she asked, I told her I was looking for some milk. On another occasion, she found me walking up the middle of the street in my underwear. When she approached me, I had no idea who she was, who I was nor what I was doing. That morning, she called the MS specialist, who instructed her to bring me to the ER at the University hospital, where he would meet us. Upon arrival there a few hours later, I had become completely incoherent…unable to speak coherently, nor walk without assistance. I failed a mini mental exam, and was admitted and spent the next 28 days. I underwent MRI scans, EMG, Brain and Muscle Biopsies and dozens of lab tests. The most remarkable, the Brain Biopsy revealed Neuronal Apoptosis, as well as Mitochondrial DNA mutations as evidenced by Light and Electron Microscopy. The mitochondria appeared similar to a condition called MELAS (Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke Like Episodes. Within a few days, I was evaluated by a visiting professor, who suggested a Mitochondrial Cocktail (Essentially 12 vitamins, Amino Acids and CoEnzyme Q10) When I began this cocktail, my condition began to improve to the point they stopped searching for a nursing home, and send me home with aggressive Physical, Occupational and Speech Therapies. Which I continued for several months, until I reached a point of Maximal improvement, which was far less than my pre illness state, but far better than where I was when I was in the hospital. Several months later, I saw Dr Beatrice Golomb, on Good Morning America, being interviewed by Diane Sawyer. She was talking about a “Statin Effects Study” which she was doing, and my wife pleaded with me to enroll, which I did, even though I knew Lipitor had nothing to do with my illness, nor disability. Several months later, I received a phone call from Dr Golomb, who informed me that my case was among several others in her study with similar effects, and that she referred our cases to Dr Doug Wallace, reportedly on the the worlds foremost Mitochondrial Disease Experts, From UC Irvine, who opined that it was his opinion, that Lipitor was the likely causal contributor to the Mitochondrial DNA mutations, as well as the holes that were seen in my brain. I WAS FLOORED!!! My illness began more than 10 years ago, in Oct 2002, and I remain unable to work, due to cognitive slowing, impaired memory, Constant muscle pain, Peripheral Neuropathy, Profound constant fatigue etc and so on…I find great comfort in the fact that there are physicians, such as Drs Steven Sinara, Duane Graveline, and Uffe Ravnskov, Russell Blaylock, Peter Langsjoen , Chris Nagy among other physicians who are willing to question this most absurd notion that Cholesterol causes heart disease…that statement is as laughable as saying Oxygen causes lung cancer…

  7. Brian and I have been very moved by the comments which have been made by others who have witnessed or had a statin adverse reaction. On the days when we feel it is easier to give up the battle for acknowledgement we reflect on the many others who do not yet know what is causing their symptoms. So, I guess we will just keep writing letters and spreading the word around about people like yourself who have the determination to keep positive. Someone wrote to me recently and said I was too determined to be defeated by ACC or the pharmaceutical companies. The emotional cost is high but I think if I did and said nothing it would be worse. Our best wishes go out to you Christopher and all the others who have posted on RxISK. Heather

  8. My mother was put onto simvastatin, a few years ago. She soon lost her ability to use her legs, to even stand up. We got her off of the statin, with doctor permission. We put her on a liquid CoQ10 supplement. Her leg muscles recovered enough that she was once again able to stand, and to walk short distances. Then she unfortunately decided the problem was cured, and stopped taking the CoQ10. Her legs reverted into uselessness, and her muscles atrophied into permanent uselessness. This was two years ago. She did not have a cholesterol problem – the simvastatin was prescribed under the theory it would prevent a heart attack.

    • Your story is so very similar to mine. My mother was placed on statins (lovastatin) for several years and eventually lost both her memory and her muscles. Like yours, her leg muscles essentially just disappeared even though her doctor had stopped the drug. She passed away a year ago Feb 3 with her legs drawn up, completely useless, and little memory. And doctors wanted to put it all off on age related symptoms. Yes, she was in her 80’s, but her twin brother and all her friends are all still going as strong as you could expect for people in their mid to late 80’s. Mom should never have deteriorated like that.

  9. Quite simply put, Statins will disable,even kill many of you; all for the sake of reducing cholesterol in the body – a goal under some considerable suspicion, especially in the last few years. As a Statin victim myself, I can attest to the lingering effects, which in my case, have begun to reappear after some time of moderate improvement. One physician, now dismissed, told me: “The problems you are experiencing could not be due to Simvastatin medication since the drug is no longer in your system!” My last remark to him was to ask if he would have the same opinion of a bullet that went directly through my head and was no longer in my body.

    This is a money issue; not a medical one – Statins are an incredible cash cow for the Pharma industry, and side effects be damned, they will continue to push the pills , and government watchmen such as the ACC and the FDA are reticent to confront the well-funded legal teams of Big Pharma. Watch the Health news relative to Statin medications – once a study is published decrying the terrible side effects, there will be a spate of claims within a month declaring Statins’ advantages nearly to the point of guaranteeing a first born male child; where, do you suppose, they originate.. This is a conspiracy, plain and simple. Caveat Emptor!

    My history and research input are available in full on the website. You are invited.

  10. My story of being harmed by statins did not end with physical damage from virtually all the side effects mentioned above.

    I learned my medical records have been annotated to say I am obsessive about statins.

    It took two and one-half years but I finally got my medical records from the statin prescribing doctors, and this is when I learned that has been written and is going out to other medical people. There is no confirmation in my records from the doctors of my side effects. just notes about me being “obsessed” with statins. I complained to the college, and was dismissed. This annotation is stil on my file.

    Every doctor I see wants me to go back on statins, because I have a familial hypercholesterolemia (but no cardiovascular disease).

    In spite of all the work that has been done to bring the truth of our experiences to the public, physicians at best, will cautiously agree these side effects *might* happen *rarely*. But not in *you*. This is their wholey hypocritical and disengenuous stance.

    Although I have recovered quite a good deal from my experienced, lingering side effects, I do not know how to recover from this spurious diagnosis which I believe was put there to make me stop talking about it or I will be fulfilling the diagnosis.

    Most recently, I saw the note that I had been working with some very talented women who were studying statin side effects.

    I was. We did the same work, we had the same goal, we worked as long and arduously to inform the public.

    They are “very talented”. And I am “obsessive”.

    • Those outside the system who do not pull our punches with our side effect reporting and who do not owe our living to the system will be subject to vigorous attempts to shut us up. Those who speak from within the system are invested in protecting their careers, first, and consumer protection a distant second, if at all.

  11. I encourage statin-harmed to tell their stories here, but also to utilize “Rate M.D.” which is highly sourced, and does not give commenter information to the various colleges who threaten them with legal sanction for allowing patients to report their experience.

    Few people know they have the right to tell their opinion. Take advantage of the few sources open to you to inform and protect others. Telling your story without naming the doctor is not good enough. You have to name the doctor, and/or the medical institution.

    Tell your side effects and efforts to get help, and tell your doctors names.

  12. I was put on pravastatin several years ago because of high cholesterol. Had stress test which came out bad which led to a heart cath but when they got in there I did not need stent. I asked if I could stop statin and opted for natural ways to lower cholesterol but doc said no. I have had problems with muscles since. First it was gout then tennis elbow maybe arthritis nothing on x-rays after enough physical therapy my insurance co will let me have MRI but where should they look. In my elbows or knees. It seems to go from place to place. The pain has been horrible. I use to walk over 3miles daily but some days I can barely walk thru the house. My life has been turned upside down. Can’t sleep memory loss pain but pills do not work they either make me sick or just feel off and pain is still there. Better without them. Told never to just stop medications and doctors don’t want to connect the symptoms with the statin. Since I don’t have a degree I guess I could be wrong. But the more I read these accounts from other people I am beginning to think I don’t need the degree my doctors need to be more honest with their patients and let them be the priority not the drug companies. If I had better insurance it also might make a bigger difference. Money talks as they say. Also if I was younger. At 62 yrs old everything is age related. My vision my bones my attitude.

  13. Pravostatin says 6/11/13 I started taking statins 12 plus years ago my husband died 15 years ago !!! So you know what I’m going to say the doctors put my acute Depression due to . It was atrocious , the pain in my leg muscles were due to a BAD BACK , I WAS SUICIDAL ,I have suffered dangerously all this time ,I lost my Sense of Humour ,Intellect , and cognitive thinking , My son said I was a Guinee pig ,I told him not to be silly I was a Cabbage , lost all my Friends and Relations , ( The Real ones are back with Sympathy )2 years now since I stopped taking The Monsters and I’m slowly coming -Back -To -Life and I realise it was a good decision not to !( finish it All ) I don’t give myself enough credit at all but I am a very strong woman , Now I can walk and feel a lot better, but I still have problems with Cognitive thinking ,which is manageable ,just about ,SO DEspite my legs like being like Sponges loosing all my teeth ,looking 30 years older and loosing all my hair !! I’m still here , but the doctors still say it’s all due to a bad back & I’m Mad !! I feel like I’ve been Gradually lowered in to a grave and I’m scratching my way up !! On my own because the Doctors don’t want to know m Money is the ruination of Man , that is the answer , I pray for you all because it’s totally un-nessasary !!!!!!0

  14. Hi People, go to this link and get info from a guy who not only has had TGA ( Total Global Amnesia ) but has researched Statins extensively.

    Me? i am lowering my Cholesterol by eating quality saturated fats – here are my blood results;

    May 2012 – 6.7
    Oct 2012 – 6.3
    Nov 2013 – 5.6

    I know this will not necessarily help those that are treading the path but my hope is more awareness will lead some to not go onto these totally pointless drugs.

  15. I have just left my new doctor and am told that effects of statins would never last so long.
    I started taking pravastatin after a heart attack four years ago.I dealt with the pain the sweat and the dropping of things for no more than a year before I quit taking the drug.I had always been active until this time.Now four years after the initial attack my maladys persist.
    The doctors ,this is my fourth one have all suggested there is nothing I can do and frankly hold a disbelief that this is a statin side effect.Yes the side-effects have diminished and yes they are still debilitating . What is a man to do ?

  16. I finally quit my pravastatin three days ago. For the past 5 years I have tried several statins but could never escape the sometimes bizarre side effects – a fuzzy mind, fatigue, itching, skin feeling on fire when in the sun, anxiety & depression.
    The tipping point for me came two weeks ago when my internist said all my blood work was OK except for an ever increasing A1c and my blood pressure. I already had overcome a high A1c while on Vytorin and thought I could do it again. Determined to beat this through diet and exercise, I quickly “crashed and burned”. I literally thought I was going to just fade and die.
    Yesterday I discovered “Effects of Statins on Energy and Fatigue With Exertion: Results From a Randomized Controlled Trial” by Beatrice A. Golomb, MD, PhD; Marcella A. Evans, BS; Joel E. Dimsdale, MD; Halbert L. White, PhD
    Archives of Internal Medicine, June 2012, doi:10.1001/archinternmed.2012.2171
    What I was suffering from is called “exertional fatigue”. So here’s the new insidious metabolic deathtrap: We already knew that if you take statins for high LDL, your blood glucose can rise along with blood pressure. What I didn’t know was that, if you diet and exercise, the statin side effects can stop you from exercising, thus forcing you to take yet another med like Metformin and another med for high blood pressure. If that isn’t a devious pharmaceutical drug cocktail designed to profit off of our otherwise healthy bodies, I don’t know what is. By the way, the newest drugs created to lower one’s A1c have the side effect of raising one’s LDL, leading to statin prescriptions. It is incredible that we are paying drug companies to make us sicker and sicker.
    I am looking forward to ridding my body of pravastatin in the coming weeks and trying to regain my strength and vitality, if that is even possible.

    • It’s now been 5 months since I stopped Pravachol. The most debilitating effect has been lowered blood sugar. Although my A1c went from 6.7% down to 6.1% – a good thing – my body is still adjusting. For months I crashed and burned every few hours because my body interpreted otherwise normal blood sugar levels as being hypoglycemic.
      So – a warning to those whose blood sugar became elevated enough to be considered diabetic- try and come off of your statin gradually so that your body can adjust gradually. You will also have to eat more often and meals need to be a balance of carbs and protein so your blood sugar goes down slowly.

  17. My heart goes out to all my fellow sufferers from this disastrous
    medical con job by Big Pharma, and the doctors they hold in thrall.
    I took simvastin 80mg per day for many months ten years ago and have never recovered my ability to go for even a brief walk without devastating pain. I sometimes imagine that we should all get together and commit Disorderly Conduct upon those responsible. My own doctor was good enough to apologize for believing the “hype” but I gather that he was very rare. Two websites have been a comfort to me – “Askapatient” and “Spacedoc.” Other than that, I have learned to live with it because I must and because I can still work – as a writer, sitting down. Blessings to one and all … Sandol

  18. I’m 66 (age doesn’t seem to feature in most of the replies) .86 kg and 1.74m (BMI not great)
    I have been taking ATORVASTATIN 20mg for 4 years and suffer from ‘all those symptoms’.
    3 t.i.a’s to date, all different sides and legs. Due to level of fitness (I swim like a fish) I have recovered most of my mobility quickly. But balance, memory, muscle pain and eye to hand facilities worsen. I am going to reduse my dosage slowly. My doctor disagrees.

  19. Put on Crestor in April 2015 as a precaution. August I could not move my arms or legs due to excrutiating pain. Two GP’s could only offer prednisolone for pain and inflammation. Didn’t work. Internet research showed me many others with similar symptoms. I stopped taking Crestor and showed some improvement. Back to my GP & cardiologist after 6 weeks off Crestor. GP agreed it was the right decision. GP said she should have thought of it. Cardiologist said I had proved it was Crestor induced and he gets lots of complaints of muscle pain but no symptoms as bad as mine. Rheumatologist diagnosed Polymyalgia but I said statin induced. After 2 visits he now tends to agree I am right. Problem for me is that I no longer have muscle pain but after 3 months my recovery seems to have stopped and I have weak aching thigh muscles which seem to worsen after physical work or exercise. Difficulty walking and getting up from a sitting position. CK levels no use. Urine is cola colour after exercise which is an indication of rhabdomyolysis. My sister who is a pharmacist tells anyone who has a prescription for Crestor to see their doctor immediately they have any muscle pain. Many worse than me but that is no consulation for anyone. To argue that only 15 in 1 million die from the medication but that it saves 30000 in 1 million is not an argument palatable to those who die or to the thousands who suffer debilitating consequences from using these drugs especially when prescribed as precautionary.

  20. Hi, WOW I have snapped 3 tendins have real damage for the rest of my life want to sue they genaric drug company but cant find a lawyer to do it ive spent alot of money both bicep tendins and have cronic burning in them just think its so unfair please help…………

  21. Drugs like this should be banned,, especially statin,i took this for a month, one and half year ago since then i got urinary urg incontinences so badly that the pain i get from it after every hour is even worse then the pain i get when my right leg fractured…

  22. I am not sure what web site I have found, but I can relate to all your stories. I first had statins in 1997,when I was 57, and by 1998 I was in hospital hardly able to breath. Symptoms that you have all mentioned were present but I was treated dreadfully in hospital at that time, and ever since no-one will believe my many health problems could be due to statin side effects. In 2010 I was diagnosed with late onset asthma due to my breathing problems. Now I have had severe chest infections and have coughed up blood. During recent breathing and walking tests I was told my oxygen level was fine and my heart performed well under stress even though I could hardly breath. I now might have ‘muscle atrophy’ in my chest, although my GP says my illness is due to old age. You can’t win!

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