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When someone has a heart attack, there is a very good chance he will be put on a statin-type cholesterol-lowering medicine. This is called secondary prevention because the goal is to avoid a second heart attack.
There are data to support such an approach. The trouble is that some people are so sensitive to statins that even a relatively small dose makes them miserable. That was the case with Matt:
“I had a heart attack in 2007. After a stent was placed in an artery I was put on 40 mg of Crestor.
“About 3 weeks later I was having a low grade ache in my hips, pelvis and lower back. I saw my physician who never acknowledged that the pain could be a result of the statin. Instead he sent me on a long, costly journey of nuclear medicine studies-MRI’S, CT scans, physical therapy, back specialists, nerve blocks, neurologist consults and more.
“Eventually the pain reached intolerable levels and I was in and out of emergency rooms. It got so bad I had intravenous Dilaudid to bring me a little relief. [Dilaudid is a very powerful opioid narcotic]
“Because I had a heart attack I was told I had to take a statin. I took myself off just to see if I improved and I did. I agreed to a lower dose of a statin but the pain returned like clockwork about three weeks into treatment.
“Here’s what I have taken and the result:
40 mg Crestor (rosuvastatin) led to an ER visit
20 mg Lipitor (atorvastatin) led to an ER visit
10 mg Vytorin (simvastatin plus ezetimibe) led to an ER visit
2 mg Livalo (pitavastatin) every third day led to extreme pain but I coped without an ER visit“On the bright side, I now take a new cholesterol drug that is injected once every two weeks. It is called Praluent (alirocumab). It has reduced my LDL to 39 with no side effects. There are no long-term studies on the drug, so the doctors would like me to still take 1mg Livalo every third day, but I can’t cope with any amount of statin. My message to people who cannot stand statins: I understand your pain and suffering.”
Thank you for sharing your story, Matt. We know that there are some cardiologists who believe that almost everyone should be on a statin. They may insist that everyone who has had a heart attack absolutely must take such drugs. But there are people like you who cannot tolerate statins, even in low doses. Although the actual numbers are controversial, some researchers believe that anywhere from 5 to 20% of patients may experience muscle pain. Some, like you, find the pain unbearable.
How Good Are Statins At Prolonging Life?
Interestingly, statins may not prolong life as long as many health professionals seem to think. We recently asked some physician friends how good statins are at extending life. The answers ranged from about two years to over five years.
These health professionals were totally amazed when we told them the results of a study titled “The Effect of Statins on Average Survival in Randomized Trials” published in the journal BMJ Open (Sept. 24, 2015). These investigators found that death was postponed between 10 and 27 days in secondary prevention trials. In one of the best trials (the “4S” study), where high-risk people were taking simvastatin for nearly six years, death was postponed by less than a month. They noted that, “The median postponement of death for primary and secondary prevention trials were 3.2 and 4.1 days, respectively.”
Perhaps more important, these researchers noted that if patients experience the kind of pain you have gone through as a result of statins that “physicians should not be too insistent on the patient continuing them. Also, for patients whose life expectancy is short, the benefit of statin therapy in terms of survival gain may be quite limited.”
What About Praluent (alirocumab) and Repatha (evolocumab)?
In the summer of 2015, the FDA approved both Praluent and Repatha to lower cholesterol. These injectable medications belong to a brand new class of medications and are being prescribed to people like Matt who cannot tolerate statins. They are antibodies (hence the suffix “mab”) that inhibit an enzyme (PCSK9) that controls levels of LDL cholesterol. The cost of these drugs is breath taking, at over $14,000 per year.
Side Effects of Praluent and Repatha:
According to the FDA, the most common side effects of Praluent include “itching, swelling, pain, or bruising where injection is given.” Some people also experience inflammation of the nose and throat (sinusitis) and flu-like symptoms. Occasionally, patients develop a severe allergic reaction that may manifest as a skin rash or purple-colored spots. The early reports are that Praluent is well tolerated, though there were some cases of muscle pain and spasms. These were considered uncommon. Liver enzyme elevations have also been noted in some subjects.
Repatha side effects are similar to those of Praluent in that there are injection-site reactions (redness, pain and bruising). People reported flu-like symptoms including nasal inflammation, sinusitis and cough. Subjects also complained of muscle pain, back pain, dizziness, diarrhea and headache.
Although there is no doubt that Praluent and Repatha are very effective at lowering LDL cholesterol, there are no data yet available to demonstrate how good these drugs are at preventing heart attacks or strokes. More relevant, we do not know whether they will prolong life. It will be some time before those results become available (best guess is sometime in 2017).
The People’s Pharmacy Bottom Line:
When people cannot tolerate statins it is important for doctors to follow the advice mentioned in the BMJ Open article above: “physicians should not be too insistent on the patient continuing them…”
If statin-induced pain is so great that a patient cannot exercise or get a good night’s sleep, the benefits may not outweigh the risks. Exercise and sleep are essential for good health.
Praluent may be a very good option for someone like Matt, but it will take a while before we know if lowering LDL cholesterol with this new class of medications actually leads to the outcomes that matter to people, i.e., longer, healthier lives.
What has been your experience with statins? Do you tolerate them well or have you experienced side effects. Please comment below and vote on this article at the top of the page. Should you wish to learn more about other ways to reduce the risk of a heart attack you may find our Guide to Cholesterol Control and Heart Health of some interest.
Diane
I am 71 and developed an allergic reaction to Atorvastatin and Crestor in that I get a rash called Lichenoid dermatitis when I take them now. The rash is comprised of purplish itchy spots that take months to go away. When I stopped the 10 mg Atorvastatin, my cholesterol when to over 280, but my HDL was 88. Go figure.
The doctors got the 75 mg Praluent approved by my insurance, and I took 6 injections, one every two weeks; but my cholesterol only came down a few points. They started me on 150 mg injections every two weeks. I don’t know yet if it is working, as it has only been 6 weeks or 3 injections.
I have no side effects to speak of, but I called the company that makes Praluent to complain that it didn’t work at 75mg and they told me that ALL the clinical trials were done with a combination of Praluent AND a statin. NONE were done with Praluent alone. If this doesn’t work, I don’t know what the next step will be.
Dave
Goffstown, NH
I am 73 and was put on statin drug 20 years ago. As they increased my dose and added full-punch Niacin 5 years ago my muscle deterioration increased with a weight loss of 15+ pounds! Not able to function like I should and difficult to exercise or bowl with the weakness and pain. Stopped the Niacin after a year but still took high dose of statin.
Now off statin and on Repatha 140MG shots for 6 shots so far. Now feeling the pain in lower back, hips and knees. This in addition to the over all muscle pain I still have from the statin. I was finally taking the dog for walks now that the weather is better. But can’t do it any more–even have pain in ankles! I’m feeling like none of this is worth it and need to come off all of it and try to get my life back!
RITA
CA
First, I cannot take ANY Statins. My doctor prescribed me 75 mgs. of Praluent 6 weeks ago. The first two shots did not give me any noticeable side effects. However, since I took the 3rd Shot a few days ago, I am experiencing pain in both legs. In addition, after injecting the shot in my right leg, I am getting shocks (e.g., lighting painful shocks which come and go). Last, I am getting tiny blood vessels popping out visibly in my legs. I am very concerned and plan to discontinue the shots in the future. I am tired of doctors putting me on medications that can eventually create another serious health problem. I’ll continue to juice, exercise, and pray. Take your own health into your hands. Hopefully, if we are not experiencing a life-threatening health condition, we are able to make this decision. God Bless.
Rita
After being put on several statin drugs which caused so much pain that I couldn’t get out of bed and function at all, my cardiologist put me on Repatha. I injected this medication in my quad muscle every two weeks for an entire year. At first I felt no side affects at all, and my cholesterol and triglyceride numbers went down dramatically. I was very happy!
However, as time went on I began to have severe pain down the fronts of my legs especially in the quad muscles. I struggled to walk because the pain was so great. I went to my Orthopedic Dr., my hip Dr., and had an MRI, also x-rays, and nothing pointed to why I was having the pain in my quadriceps. I was living in my recliner and taking a strong pain medication at night just to be able to get some sleep. The muscles in my upper legs were almost paralyzed, and the pain was unbearable! I have always had very strong legs and never any problems at all, my entire life. I couldn’t figure out what was happening to me.
After going to many doctors with no results finally my primary doctor sent me to a group of physical and occupational therapists who are quite amazing to say the least. I am improving but I have been told that it will take a long time. It has come to light that the Repatha is responsible for the damage in my leg muscles. It may be permanent. Only time will tell. My cardiologist swears that it is not the Repatha. But that was the only change in my life, and that changed my life!!
I firmly believe this medication has damaged me I’m just hoping that I can recover from it. I have been off this medication since December of 2018. It is now March 17, 2019 and I’ve been in physical and occupational therapy since Feburary 12th, 2019, going three times a week. I’m still suffering intense pain at times in my legs. I am able to walk some now but still can’t be up on my legs for very long without severe pain. This is my testimonial just as a warning to others to be very careful of what you allow to be put in your body!!
Doug
Illinois
History of Myocardial Infarction (of 3), Type-II diabetes.
After the first MI was put on lipitor. Leg pain so bad could not put feet on the floor. Dr said not related! Changed Dr. I have tried zocor, prevastatin, niaspan, zetia and several others. Nothing delivered the numbers desired. Livalo 4mg did the trick. Great numbers and no issues. Insurance removed livalo from coverage, and I could no longer afford it with the other meds. The same insurance approved Praluent 75 every 2 weeks. First injection – nothing at first, then 3 days later mild aches and pains. Second injection – runny nose, cold symptoms and hand and elbow pain. Third injection – cold symptoms and worse hand and elbow pain. I’m scheduled for blood work at my 5th injection. Not sure I will still be on it by then. Livalo was almost 800 a month but no bad effects other than keeping me poor.
Perfecto
Florida
After reading these comments, I feel like I am a victim gambler. We pay a lot of money for the medicine we take for results that are neither assured or concrete and are questionable. Why do we do it? My reason is a beautiful, wonderful 11 year old daughter. I am 62. My first heart attack was at 40 (stent); triple bypass at 45; three stents at 50; two more re-stents at 55 and another one at 59. Never smoked, never drank. BMI of 32. Diabetic at 27. High blood pressure, high cholesterol. My brother, my son, and I are sensitive to statin drugs. Muscle pain, soreness, cramps so bad that I developed scar tissue and paralysis.
I have been using praluent for about 9 months. Great numbers. But my sugar levels are running high. Insulin seems to have no effect on my body, and exercise is not as effective as it used to be, and I feel tired and weak. Not sure if these are the common complaints of an old man or actual side effects of the drugs I take. I don’t know, and the doctors can’t assure me.
Donald
Rural Minnesota
I was put on the first statin drugs by my cardiologists at Minneapolis Heart Institute. At that time I was forty three years old and had a family history of heart problems. My father died of a heart attack at age 54. I am now 72 years old.
With Mevacor and Zocor I had liver function changes. When put on Lipitor my local doctor
treated me for tennis elbow. I stopped the Lipitor, and the issue with the elbow stopped being a problem. Pravachol was a new statin, and my cardiologists put me on it. Within three weeks I could not lift my left arm. I also tried Crestor and had the same issues with weakness and pain.
My medical chart now shows that I am allergic to statins.
Henry
Ontario, California
For many years, the doctors keep telling me that I need to be on a statin. The problem is that I do not tolorate statins, for the side effects put a toll on my body with tremendous muscle pain and gait problems. I just started with Repatha injections a few days ago. The first injection made me feel like I had flu symptoms. It only lasted one night and it was tolorable. I hope and pray that Repatha works for me because for many years now, not being able to take a statin and watching what I eat, my cholesterol continues to be elevated. This article has helped me understand my problem a little, so I pray that this medication Repatha works for me. Thank You.
Phyllis
Pennsylvania
I have developed high cholesterol since menopause. I have no idea if I had this as a child because 70 years ago they didn’t test children for cholesterol. My numbers seem to be impervious to weight loss or exercise or type of diet- balanced, paleo, vegan. I tried Lipitor last year and although my cholesterol dropped I was in agony from the muscle pains. I could not sleep and I could barely walk. I could not climb stairs in sequence. So they switched me to Crestor- same result. Now my doctor appears completely befuddled by what to do next! Question is can you take Repatha without also taking a statin?
carla
I also cannot take a statin, and my doctor is recommending Rapatha or Praluent injections. I have researched other patients after they took it, and the consensus seems that the side effects start after 6 months, and some are irreversible. I most likely will take Niacine ER.
Jill
Denver
I have not had a heart attack ( knock on wood) but I am at a high risk level with HCM, CAD, hyperlipidemia, Diabetes, HTN and overweight. I have been on every statin created for various lengths of time and I get profound fatigue and muscle weakness rather than pain and cramping. I thought my weakness was just do to my other cardiac conditions.
It wasn’t until my cardiologist at Mayo Clinic told me to try 6 full weeks without Statins….that I found out that pulling myself up the stairs with my arms ….because of leg muscle weakness….was not baseline functioning….it was statin induced.
I have considered trying Repatha but I cannot afford the co-pay. I am ultimately okay with being functional even if at risk for a heart attack…..We take a risk everyday just walking out the front door… Right?
Karin
New Jersey
Please, please, please call Repatha (their Repatha Ready division). You can also go online instead. They will give you a co-pay card, which means that you only have to pay $5 (yes, that’s five dollars) in co-pay. They will cover the rest.
Praluent has a similar copay card, that covers your co-pay. The “only” requirements are that you’re on commercial health insurance, and that your insurance company has approved the medication (Repatha or Praluent) for you (which can be very difficult, in and of itself, but Your cardiologist’s office should help You with the approval process–based on Your post, however, it sounds like You were already approved, so that’s great news).
Good Luck!
Chris W
Wausau, WI
Jill, I am certain that you are unaware (as most people..including drs) that Statins offer ZERO benefit when used in primary prevention, and ZERO benefit for women whether in primary or secondary prevention.
I suggest you check out the book “The Truth About Statins: Risks and Alternatives to Cholesterol Lowering Drugs” by Dr Barbara Roberts MD, a Cardiologist of 30+ years who specialized in Women. Also of note, that when the PCSK9 Inhibitor drugs Praluent and Repatha were unleashed, all of the advertising ended in tiny words “The Effects of Repatha on Heart Problems such as Heart Attack, Stroke and Death Have Not Been Determines” and now all of the sudden the bottom of the TV, Magazine Ads state “Repatha is Now Approved to Reduce the Risk of Heart Attack And Stroke” note the Semantics, nowhere does it say proven to reduced an event like heart attack and stroke, but it states it reduces the RISK, as we’ve all been browbeaten into believing Cholesterol Causes these things, even it it is only correlation but never proven.
Trish
California
I CANNOT take statins at all. Cramping so bad that I had fallen twice. Dr. put me on Preludent, and my
Cholesterol is dwn 109 points. Have some minor cramping still. Has anyone had continued cramping even after being off of statins? I’d like to know.
Eljay
Washington State
I experienced my first blockage (Dr said “almost a heart attack”) in 2005 at age 57 while in the best physical condition of my post-40 adult life…maybe that’s why I recovered quickly. A couple of stents later, I was good-to-go with no heart damage. I tried various statins; each one caused mild to extreme muscle and joint pain that made sleeping, walking, other exercise painful. At that time, my LDL was around 120. In 2009, I had another blockage, same artery, but Drs could not tdetermine if there was scar tissue growing over the old stents vs. another plaque incident. Another try at statins…all of them…with similar aches and pains. I began taking red yeast rice and niacin and made it 7 years before, on a routine exam, another blockage of the same artery was discovered…another stent. In May of this year, Dr found blockage in a non-main artery…My LDL was 77! Who knows but I still will NOT take a statin. I’m starting on Repatha in January…will report back in 6 months and let you all know how that’s going.
carla
44124
How is it going after 6 months?
Bob
Florida
LDL 150
40 mg Lipitor daily,,,,,,,,,,,,,,,pain unbearable
40 mg crestor daily…………..pain unbearable
5 mg Prevastatin 3 times a week…..did nothing to bring my cholesterol down
2 mg Livalo daily…….back pain, muscle aches, extreme pain in the hands
Have not found a statin without extreme side effects. I have BCBS insurance and they say I do not qualify for PCSK9 injections which are 14,000 dollars a year which I cannot afford. The reason they say is because I have not had a heart attack however there is history of heart disease in my family. Where do you go from HERE?
debbie
Illinois
I had severe leg cramps inside of knees at night when I tried to sleep. I have been off of Praluent for 6 weeks, and leg cramps have stopped. Dr thought I should go to PC Dr to see what the problem was, but I really thought it was the injections, so stopped them on my own. Thinking about going back on them to see if the pain comes back!
Patty
New York
After a year of no statins for a familia hyperlipidemia and family history of heart attacks and other heart diseases, I took Repatha (for 3 months) and ended up with diarrhea & flu symptoms requiring bedrest. In order to qualify for Repatha and now Praluent, my cardiologist said the insurance company would need to have sonograms of the carotid arteries to proved the need to reduce the LDLs. I have not had a heart attack and do not suffer from high BP and was approved by my Independent health insurance. The copay was $600, I requested assistance from the makers and that was picked up by the pharmaceutical company for now. I take Ubiquinol and eat lots of tumeric, Stress B vitamins and Fish Oil from Norway. First shot of Praluent was yesterday. No injection site problems. Any worsening muscle pain will be the end of drug therapy for me and I will live with familia hyperlipidemia.
I stopped statins as I had a diagnosis of statin induced Rhadomyolosis while on Pravastatin 40 mg. Had been on Crestor, Lipitor, and Zocor, Simvastatin in lower doses prior. An initial therapy of red-yeast rice had no effect on LDLs of 180 and total cholesterol of 300. It was over a year before I could sit without pain from the Rhabdo. My feet, hands, calves still go numb; I have chronic lower back pain and hip pain but only when I lay down at night. My knees scream and so does my major toe. Test conclude minor stenosis in back but the orthoped and neurologist don’t believe it to be the cause of my muscle pains. Also had rheumatoid workup and endocrine studies. So, I forced myself to walk 2 to 5 miles, 3 to 5 days a week and when I don’–I pay for it. Keeping active and eating natural (nothing out of a box) is essential. You won’t feel like exercising, but you will feel better as you get into a routine.
Ralph
Va
I took 2 shots. After the second one my throat swelled shut. Was in the hospital on rejection drugs on 11/25/16. I am still having swelling in my throat, and this is 10/10/17. Any sugestions on how to get the swelling down would be welcome.
Tori
Alabama
For 4 years I refused to take Statins then finally gave in. I had taken them for several months and the more I took the worse I felt. It was getting so bad I was in the doctors office, aftercare, and the hospital ER every day, some more than that until I found a doctor who put me in the hospital. They did so many tests and finally said I was in liver failure! This was do to the statins. I hope this works, if not I’ll quit taking it.
Kimba
CA
Family history of heart attacks. I had a major heart attack when I was 39. I was lucky that I was able to have 3 big stints instead of surgery. Cardiologist put me on Crestor. After 2 weeks my muscles literally seized and I couldn’t move. From there I’ve tried them all and I simply can’t tolerate them. Current LDL is 163. That number has crept up as I’ve aged.
Doc wants me to try Praluent. Over the years I’ve learned that not all medicine is good medicine. I’m very sensitive to medication and I am afraid to take this new medicine. I’m just not sure what to do. I also feel my cardogolist is pressuring me to take Praluent. Thing is I’m not real sure what I would gain. Does low LDL equal a longer life? Will it erase heart disease? Is there another way?
Mark
Colorado
After a massive heart attack at age 43, I was put on typical statin therapy. I was ok for about 6 months, and then it all changed. I had a tremendous number of side effects. Mental fog, joint pain, increased liver enzyme numbers, exhaustion, I was a mess. I took every statin available over the next 5 years and all had the same horrible results.
Reality is I never had high cholesterol, bp is normal, and I am not overweight. I personally believe and have confirmed this with several doctors who are friends that, the medical community prescribes statins as an insurance policy to prevent lawsuits from patients. A patient has potential for a heart issue, we better give him a statin, so if he does have a heart attack the DR. wont be sued for negligence.
My father who had quadruple bypass at 54, and subsequently died of a heart attack at 72. Six months after my MI I had the same issues with statins. They are not worth taking. I have been on Repatha for 1 year. No joint pain until recently with ankle and foot problems, but it may be unrelated. I do believe there are still some cognitive issues, but not nearly as bad as on normal statin therapy.
Freddie
North Georgia
After 14 years of foot numbing damage from statins, I stopped the statins and my total cho went up to 265. We tried Praluent. After ONE month my total cho dropped to 142. LDL dropped from 135 to 56. HDL went from 38 to 44! Triglycerides dropped from 266 to 212 but need to be lower and less carbs / sugar is only hope for that. So far, after only 2 injections, I am amazed.
Robert
Springfield, MO
It is strange and embarrassing that the medical profession still insists upon a patient taking statin drugs. I have been on every single statin drug from mevacor, pravastatin, zocor, crestor, and others starting with low, medium and then high doses. I had severe back pain and joint pain and fatigue on all doses and never reached under 300 with cholesterol.
I have had CABG, plus 2 additional MI. Each time I was told that I needed statin therapy. I was off the drugs for 2yrs, and then put on Praluent 75mg then 150mg. My cholesterol total after 2 months was 147 with 51 HDL.
This drug really works. My concern is the cost. At $1,500/ mo with $200 copay/mo it is prohibitive since I am on 23 other meds, all with copays. I recently applied to the VA for an exception (it is not on the VA Formulary) and was denied. All they looked at was the cardiology aspect. They did not consider that I have cirrhosis of the liver (drug induced). It was the first time that I was disappointed in my VA care.
I am a 78 years old veteran and a polypharmaceutical phenomenon with lung disease, CVD, late stage cirrhosis, infrarenal AA of 4,9mm, allergic asthma, severe insulin dependent diabetes, who is on Oxygen 3 ltr/min 24/7/365. The whole joke here is that I am a college professor of Microbiology, and give guest lectures about how CVD is really caused by inflammation and lack of collegen due to chronic scurvy. About 1/2 the people who die from CVD have NORMAL cholesterol. Sorry to ramble Robert Stone
Greg G
USA
I have become increasingly convinced that the medical profession is lost in a sea of unproven information.
Art L
Canada
Greg G Your post is very interesting to me. I had 6 coronary blockages in 2013 and 5 stents. I was on Statins for 2 years until I could not stand the leg pain only longer. Once I was off the beta blocker (which slows metabolism and made me gain weight) and off the Statin I was able to get back to my normal weight. I lost over 20 lbs in just over a year, and my LDL went up about 10%.
My doctor put me on Praluent in June, and by the end of July I was having the same pain (maybe worse) as I did with the Statin. I’m toughing it out in the hopes of shaking the side effect as my body become accustoms to whatever is causing the pain. I never had a real cholesterol issue, as I was only in the high range of normal when I had my event which was angina, luckilly no MI. My only bad habit was eating red meat. I never smoked or drank alcohol excessively. I would sure like to know what is causing my inflammation or arterial plaque build up. I was only 57 and very active when I first had trouble. Is Praluent a miracle drug? Not sure yet.
Ralph G
California
I posted two months ago about my MI in 2004, subsequent CABG (twice) and stents, and how I refused to take statins after trying every one. I began Praluent on 2/1/207 but had not yet checked my lipids as of that posting.
Classic good news-bad news. After 10 weeks of Praluent, my LDL was 37 (!!!). It had been in the 100-125 range despite diet and exercise and zetia and Niaspan. Having an LDL of 37 was not attainable with statins, as I understand the numbers.
The bad news, I begin to experience “neurocognitive events” that crept up subtly but became pronounced at 16 weeks – medication induced OCD. I had intrusive thoughts, way too frequently, of violence toward people who ordinarily would me mildly annoying, including an EP cardiologist, and of sexual fantasies not involving my spouse.
I am self-aware enough to know when my rationality is compromised, and I had never had OCD before, although I know people who have it. I also cleaned my house far more thoroughly than ever before.
So I stopped taking 150 ml every two weeks, and will wait until the mental status baseline returns. Of course, no one knows whether it will, or when. Luckily it seems to be subsiding after 6 weeks without.
My trusted cardiologist agrees that we should seek a happy medium, and LDL between 70 and 100 and dosages that do not make me crazy. Whether that can be attained remains to be seen. An aside, I checked to see how much less my insurer would pay if I went to 75 ml and the answer is zero, if you are a pharmaceutical company with a miracle drug, the cost of production has nothing to do with the price you charge.
Carol
Cheshire
I was a runner, a vegetarian and the only precursor I had to an MI was stress, I had just lost my husband to cancer. I was 56 years old.
Luckily, no major damage was done to my heart and I was stented and sent home.
Two years later my statin had been changed twice due to liver problems, my stent fractured and a new one had to be inserted, Statin now changed again but six months later more liver damage.
Over and above the liver problems I had severe cramping in most of my major muscles, tried CQ10 but no improvement.
Finally, Resuvostatin was prescribed and I was fine for two years, still had major cramp issues but no liver damage. Then my feet went numb, followed by my hands.
Rosuvastatin stopped on doctors advice and have now regained some of the lost sensation in feet and hands are now ok.
Today I had my first injection of Preluent, fingers crossed it works. I had so many obstacles to clear to get this drug, I have an inherited lipid problem and have been walking round with an LDL of 9.4 which is way to high and Apheresis was being considered – colour me relieved!
I wish all of you well and hope I am too!
RR
Hawaii
I had to come off statins after using them for nearly 20 years. My side effects were a low grade outbreak of skin pain which doctors confused with herpes sin zoster – Shingles without the skin rash. I have been an athlete my whole life, but suffer from genetically high LDL, so even when I was competing in my 20s, 30s and 40s I still had high LDL, except when the skin pain was so bad I felt too run down to compete. When I came off of Statins the skin pain went away, and has only come back, when I am sick or run down. I am trying to see if Repatha (e.g.) will help on its own, as I am worried about a silent killer building up in my arteries.
Bob
Idaho
I tried every statin. Bad results. Muscle pain was terrible. Took praluent. For the first few weeks no side effects, then muscle pain, joint pain, can’t sleep because of the pain. It seems to attack weak muscles or joints. I’m trying to stay on it a little longer to see if I can get past the pain but have my doubts. I guess some of us just have to take our chances without them. Good exercise, vitamins, and a few more stents along the way. One thing is sure living with pain like this isn’t really living so if it doesn’t stop I’m done with the statins.
Ralph G
Los Angeles CA
Hi, I’m a 63 year old man with a history of MI and CABG (2004) a second CABG in 2015, stents placed in 2007. I tried every statin and red yeast rice, all with same result, unbearable muscle pain. So when the FDA approved Praluent, I actually had to leave Kaiser Permanente in order to have it prescribed by an “independent” cardiologist. I will bet that only people with FHH get the new drugs from HMO’s, and they represent 1% of the population of people with cardiac disease.
I was ready to fight with Blue Shield but they approved Praluent (!!)
The side effects for me are subtle – worsening of nasal allergies, tolerable lower back pain, fatigue. But I have also been diagnosed with Non Sustained Ventricular Tachycardia, for the first time, since I started. The doctor assures me the NSVT is attributable to scar tissue from the MI causing conduction problems.
As many have pointed out, it is too early to tell whether Praluent and Repatha will actually lower risks of MI’s and strokes. I refused to take statins because the benefits were so clearly outweighed by the unpleasant intolerance. If I thought Praluent was causing significant side effects, I would probably stop, even though I am not paying for it directly (my health insurance premium is about equal to the cost of Praluent). So far, so good.
Ralph
Tyler
Ohio
I ended up here looking for information and found that I’m not the only one suffering from the wheel of statins.
My original cardiologist made me feel like I was crazy when I told him about the excruciating muscle pains. He finally just quit prescribing statins all together. Luckily for me he moved out of state. The first thing my new cardiologist did was convince me to try statins again augmenting them with 400 mg of coq10. I was able to tolerate livalo, but it is not controlling the levels, and I have been switched to atorvastatin. So far so good. No pain at all.
If you are like me and cant tolerate statins at any level, and can’t offlrd these prices. It might be worth a try.
Jeanette
TX-Texas
I found out about three years ago I was diabetic and went on Metformin. it still was not helping. That doctor left and my new doctor put me on insulin and kept increasing the dosage and adding additional dose. She also was concerned about my high cholesterol level so she started me on Statins. Well that didn’t go well, so she tried another brand and that didn’t either. Finally I was referred to a endocrinologist and she was a little more open and said we need to get that Cholesterol down. I told her no statins. So she convinced me of a lower dose and that didn’t work so she referred me to a cardiologist and he recommended the Praluent and I am waiting to see if my insurance will approve it Oh and I got online and realized I was eating all wrong for my diabetes like they were telling me to do. I started out with the Banning diet which is good but I need to cut some of the calories. I am still on the high fat/low carb diet and my A1C is 6.1 and the doctor has cut my insulin way way down. My blood pressure has dropped to normal. On top of it, it did not raise my cholesterol any higher, in fact it has gone down a little. My endo doctor is so impressed. Now to get my Cholesterol under control. Hopefully the Praluent will do the trick. READ before you take any drugs, please. If it says it may harm your liver and you need to take CoQ 10 supplements for taking it….that is a red flag for me. I will be 75 in September and the only drug right now I take is insulin and a baby aspirin. My daughter of 45 was a yogurt baby formula baby and I had my girls on vitamin C and Aloe Vera. They were healthy.
James
New Orleans, LA
I sound like Matt, too. 1st heart attack 11/96, aged 44. tolerated statins okay or so I thought until my cardiologist suggested 80 mg/day of Lipitor, in May 2007. unbearable pain lower back, weak legs etc. I too concluded it must be the Lipitor so I decided to discontinue on Oct 5 2007. I felt improvement each day for 500+ days! also could not restart any statin without resumption of pain. Finally had the quad bypass on 10/24/16 which I suspected was inevitable. Started the Praluent 12/1/16. Compared to 8/22/16, LDL dropped from 144 to 85, HDL up from 47 to 57, TriG down from 234 to 168. so far no side effects. fingers crossed!
s sarver
michigan
I noticed that all references to high cholesterol only talked about the number. Research indicates that the ratio of high to low cholesterol is what matters. If the ratio is 4/1 (high/low), the total number is not a concern. Is this true?
Freddie
Almost a mirror image of my history. Two bypass surgeries 1999 and 2009 and 19 stents along the way. The statins were killing my legs and feet. I just started Praluent. Cut my lipids down like yours. So far so good.
Rosemarie
Fairview, Tx
I am a 68 year old women and have been taking Praluent for 6 months. Great on lowering cholesterol but, started having severe pain in both knees. Experienced swelling as well. Did MRI and waiting for results. Walking with the help of crutches. I have stopped taking Praluent.
Larry
Maine
Been taking Lipitor at 40MG for 8.5 years after open heart surgery and heart attack back when I was 41. I am now getting numbness in my toes and some pain. I also have noticed a decline in energy and wanting to do things. Based on all my research it has to be the statin. I had a long talk with my Pharmacist and he said he would come off them for 3 months. I have let my doctor know and have decided to take Vitamins and Coenzyme q-10 200 milligram all natural with all the B vitamins, vitamin d and C and much more in one pill. My system needs to replenish Co Q 10 to build back my energy. I am also going to change my diet and work out more after my energy level goes back up. I will take a blood test to see how my LDL is and than go from that point.
Diane
Los Angeles
This website is very enlightening. Why do doctors insist on a patient trying a medication, especially if the patient is extremely sensitive to medications? They also seem to want to treat individual symptoms instead of looking at the whole picture and figuring out why you are having the symptom, as well as the underlying cause of it.
I’m 68, and have been diagnosed with so many things I feel like a walking medical reference book. The truth is many of the ongoing ailments are related. One of them could be responsible for causing one or more of the other health issues. There is also the problem of medications they give you for one of them can aggravate or increase the risks of the others developing or being aggravated. Hypothyroidism, Type 2 Diabetes, Discoid Lupus, Obstructive Sleep Apnea (with small percent of Central Sleep Apnea), various skin issues, environmental and food allergies, high BMI, and very high cholesterol are all listed as my ongoing health issues. There’s more, and looking at the list you’d think I’m not long for this world, but to look at me you would never know I had any of these diseases.
I look, well, normal, but I’m on a merry-go-round that keeps speeding up, and as it does each revolution brings some new illness. Each specialist only treats one thing, and while they are aware of the other issues, seem to shrug them off as irrelevant. One thing most of them have agreed on is lowering the cholesterol. I was referred to a cholesterol clinic and tried every statin drug, with the same result, the extreme muscle and joint pain, to the point I couldn’t lift my arms because they hurt so badly. They tried me on other non-statin regimens, all of which caused a series of side effects that were not tolerable. One of the worst was a Niacin protocol. If I took an asprin about half an hour before the Niacin it reduced the flushing reaction. I was doing o.k. for a few weeks and the cholesterol was coming down, when I developed what I call bubble wrap skin. Noticeable raised bumps on my skin, that looked like blisters. They didn’t hurt, and were basically filled with air, because as I touched them they would flatten out and the skin would peel. It was creepy. I also started to develop dark areas of skin on my body in places that had no sun exposure.
Of course the doctor had me stop the therapy immediately, and after a couple of weeks those problems resolved. Even though I have been thoroughly checked by a cardiologist, who tells me my heart is fine, he insisted on my trying Praluent because of my very high cholesterol. I had the prescription filled and it is sitting in my refrigerator. It has been there for almost two weeks because after reading the brochure I am afraid to take it, especially now after seeing some of the comments here. Is it possible that those of us who have multiple health issues also have higher cholesterol because our bodies are trying to repair those problems? Isn’t that why our bodies make cholesterol? Undoubtedly in some of us the process has gone haywire, but I can’t help thinking that because many of us are so sensitive, just maybe we are products of our environment, and all the genetically modified foods and products we are exposed to that make our bodies go haywire.
Yes, I get that it may be an inherited family trait, so why aren’t the researchers trying to figure out the exact reason this happens in individuals, and/or families, instead of coming up with new, ever more expensive medications to suppress the process, that may increase our health woes instead of helping them? One medication does not fit everyone. Yes, there has to be basic guidelines for health maintenance, but the medical professionals should take a step back and realize that there are a number of patients whose tests fall outside what is considered normal range that are actually very healthy, just as there are those whose tests are dead center in what is considered the normal range who are truly dealing with diseases that go undetected. As an example, my husband said in the service if you went to sick bay the standard response was take two aspirin, regardless of the reason for the visit, which didn’t do him any good since he was allergic to aspirin. It appears in many cases the individual needs of each patient are not being fully addressed by their medical professionals.
Chris
WISCONSIN
What bothers me most, as a former Critical Care RN who “Knew” everything there was to know about statins, like the reduced your risk of a heart attack by 40%, as I was taught at the best drug conferences I attended, what I did not realize is the 40% is a Relative Risk Reduction, and the more accurate and less misleading Absolute Risk Reduction of any statin, is between 0.34 and 2%, a far cry from the glorious percentages you hear on television commercials constantly. Another KEY Statistic to look at before you consider a statin, or any other cholesterol drug, is the Number Needed to Treat, which for statins hovers around 300…that means that 300 people need to take a statin, in order to potentially prevent one Cardiac Event…while the other 299 are left to suffer from the horrendous adverse effects these drugs can and often do have.
After taking lipitor 10mg for 3 years, I was hospitalized with end stage Alzheimer’s like symptoms, I could not walk, talk, did not know my wife, my 2 year old son, my parents nor my siblings, I was nursing home bound at 34 years old, based on my brain biopsy showing holes in my brain (Neuronal Apotosis) and an Electron Microscopy showing Mitochondrial DNA mutations, similar to Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-Like Episodes (MELAS), it wasnt until I was started on a Mitochondrial cocktail, essentially 12 vitamins, amino acids and one KEY nutrient, CoQ10, when within 36 hours of starting this, I was able to speak words coherently, I was able to verbalize the need to use the restroom, and I could walk with assistance, I began to recognize my family, and a few days later was discharged home with a disgnosis of “Viral Encephalitis” which in hospital speak, is we spent $300, 000 of your insurance companies money, and cannot agree on a diagnosis, so well call it a virus, with aggressive Rehab therapies.
Several weeks after discharge, I enrolled in the UCSD Statin Effects Study, to which Dr Golomb informed me, based ont eh study, and her sharing my case with Dr Doug Wallace, at UC Irvine, both concurred that it was the effect of my taking a statin which caused the holes in my brain as well as the Mitochondrial DNA mutations.
It will be 15 years since becoming disabled due to the unpublished, unrecognized effects of Statins. I have had to fire my primary care doctor and 2 neurologists, who even after discussing my case with Dr Golomb, relentlessly tried to prescribe another statin. As for the new, “latest and greatest” PCSK9 inhibitors, called Repatha, Praluent and the like, if you look at the drug literature given to doctors and patients, at the very bottom you will see the phrase “The effect of Repatha® on heart problems, such as heart attacks, stroke, or death, has not been determined.” per https://www.repatha.com/repatha-high-cholesterol-treatment/ then ask yourself, why am I taking this $1400/month drug?
Jill
Colorado
With the amount of research available that Statins decrease CO Q 10 in mitochondria …..EVERY prescription for a statin should be accompanied by the advisement to take 100-400mg a day of COQ10……Those of us that already have cardiac myopathies need the higher doses. Even then, I got the effects of fatigue rather than cramping pain.
Jim
SoCal
My doctor put me on Praluent since any type of statin caused me serious problems with my joints and soft tissue. The Praluent worked great at first lowering Cholesterol but within 3 months, I began to have joint problems.
I spaced out the shots longer than recommended but this did not help. It has been 4 or 5 months since I stopped taking it and a couple of my joints are still not back to normal.
They want me to switch to Repatha not sure if I will or not. I will wait for more comments to come out about it to see if anyone taking it has these types of problems.
Karen
Texas
I also was unable to take Statins. The intense muscle and bone pain started within a week of taking them. Even when I stopped the pain remained for almost a year. I thought the damage was permanent. Eventually I got better but my cholesterol continued to climb even with exercise and dietary modifications. Not surprisingly, I soon developed a blockage in my heart. My cardiologist prescribed Repatha to me and within six weeks my cholestrol had dropped from 362 to 180. I have been on it for 9 months now and not one single side effect. I am thrilled!
James
NY
Hi Karen me too Praluent injections have made me sore in the surrounding areas and then some at the top of my work boots i cant touch my leg my knees ache and the injection in my right thigh must have hit a nerve been about a month and wont go away feels like rug burn or hitting your funny bone also stomach below injection site has been sore just starting to realize it all might be from the Praluent
EDB
CO
It is my understanding that Repatha only comes in 150 mg and that it works same as Praluent. I have been trying to find some way to tolerate Praluent since Dec 2015. The side effects for me are the same or worse than statins. I am now on 75 mg and have muscle pain and no energy. Chronic fatigue. I am normally a high energy person; finding it hard to get walk my normal 3-5 mile daily walks. I’m going to give it as long as I can bc I know it works! At what cost yet to be determined. I long to feel good.
Beth
England
Oh dear! like listening to myself! I have familial hypercholesterolaemia, over the years I have tried 5 different statins, all had muscle & sleep side effects – Rosuvostatin at way below therapeutic levels. I have four coronary artery stents (I’m 57) and I’ve had LDL apheresis for the last 18 months. Had my first injection of Praluent last week, hopefully to replace the apheresis. I will post my blood results as they come in!
Karen
Conn
I just started and it is soon to stop have had all side effects. I did a coral study and it was a lot longer than 14mos. They have no idea of what the final outcome is going to be. I have too much to lose at this time to have any other side effects.
Cheyrl
Indiana
Started Repatha in June, 2016. I am 69 yrars old and have been without any heart events.
Hip, knee and muscles in the back of my legs are considerably achy. On the pain scale, it is usually a 7 to 8. I just started otc 500mg of Tylenol. Today I have taken 6 since I woke up this morning. I have taken statins for at least the past 20 years. My muscles feel like squishy jelly. The bone pain has slowly increased. I am seeing a Cardiologist in October per Express scripts. Express scripts pitched a tantrum when my Internist prescribed Repatha.
My physician was told that a Cardiologist or Endocrinologist is needed to prescribe Repatha.
I hope I can stand to wait for the Cardiology appointment.
Hatty
I cannot take statins. Tried them all. Am miserable on them. Stomach problems, muscle pain, joint pain, etc. I have had very high cholesterol all my life since they began checking it over 25 years ago. Ranging anywhere from 259 to 380.
The doctor now wants to put me on the Praluent injections once a month. I am not so sure I want to do that. I cannot take a statin, so how can this drug help when it needs to be taken WITH statins? The cost is outrageous.
I don’t like that the research is not available for long-term problems, and I do not want to chance feeling worse than I do now by starting a new drug that cannot wash out of my system as quickly as taking a pill. What to do… what to do… not feeling that the risk outweighs any benefit.
cj
Ecorse, MI
I just started praluent because I couldn’t take any statins and I had a horrible experience with the drug. Two days after the injection I developed a UTI infection and another two days go by and wake up in the middle of the night with sever muscle cramps and spasms. I hope someone can come up with a drug that can help people like me who aren’t able to take statins and be able to enjoy life!
hatty
Thanks for sharing this. I was about to take my first injection this week. This solidifies my mind on it. Will not be doing it. One of my main problems is stomach, and muscle pains as it is. Seems like taking Praluent would only exacerbate my existing problems.
Carlos
Oakville
I have taken Astorvastatin in doses of 40mg and 20mg respectively, and I simply stopped taking them because of the muscle pain, cramps and memory issues I was experiencing. I couldn’t get any sleep. I was grouchy all the time. Once I stopped taking the statin, I was able to exercise, dance with my wife, take the dog for walks, in short, live.
The statins were no solution for me, but I had a stroke, and I was back on Astorvastatin again, and the muscle and joint pain, cramps and cognitive issues came back.
I’m willing to try this new medication, because the alternative is unbearable.
Tessie P
Blue Point NY 11715
I too could not take any statin without extreme pain and spasms. The cardiologist gave me Tricor, and I found myself in congestive heart failure at 58 after a coronary artery bypass graft. I then developed diabetes and instantly gained 40 lbs over a year. I stopped taking all cholesterol medicine and treated my diabetes. The endocrinologist worked with me to get a non-metformin drug (that too gave me dire effects), and one insulin pretty much controls the diabetes.
I lost some weight and have started praluent with NO SIDE EFFECTS. My LDL went from a baseline of 179 to 59. My total cholesterol is 159. Am happy with it. I will be 69 next month. I hope to avoid a heart attack & stroke. I leave that to my Creator..
Sunnybrook
Central Florida
Tess, it doesn’t hurt to try it. I, too, have had problems with Statins. I was able to take them for 7 years with no problem, then as I aged I developed muscle pains and severe fatigue. I finally decided not to take Statins of any kind, after trials of 4 different ones (all with similar results).
So, for the past 6 years I have not. My cholesterol is high and so is my LDL. My late mother and several maternal relatives all had strokes and heart attacks. I have decided jointly with my physician’s advice to begin Repatha tomorrow. I am excited about the prospect of having an alternative.
I pray I will be able to tolerate the med and that it will help. My doctor has informed me that there is a very large study on the efficacy of Repatha coming out in April, 2017 that has very good news in it. He indicated that there is large reduction in cardiac and CVA events with this new drug. Protocols will almost certainly be changed to include Repatha. Hope you are encouraged by this. I know that I am.
Michael
Tampa, Florida
I have been unable to take any statin due to side effects , having tried them all.
Now on Praluent with a dramatic drop in ldl. No noticeable side effects after 3 months.
My cardiologist says compared to statins the benefit of this method of lowering cholesterol is unknown until studies are completed, maybe within the next year or two.
The very high price of Praluent is of great concern, not knowing whether the medication will prove to be beneficial. However I intend to continue until at least one long term study is published.
Lucy
CO
I got high blood sugar fasting over 100 when it used to be 86 on a statin I quit taking it. My doctor nags me and tells me that Statin side effects are all in my mind. I quit going to doctors. All they do is make me worse and they don’t listen. I heard this new injectible drug does the same thing as Statins and it also uses the same pathway that causes diabetes. Diabetes also raises risk of heart disease. Nobody has ever done a study, as far as I know, if the worsen of diabetes is offset by benefit of cholesterol lowering drugs. They are pretty confident that diabetes isn’t such a big deal. It seems like a big deal to me.
Helga
Sydney/Australia
I have a Friend who gets terrible Itches and Rashes from his Cholesterol Medication. To get rid of the Itch he has to stop Medication for a Week. God knows how it is affecting him generally.
Seems to have bad Brain fog at times and gets very irritable and hard to deal with. Since he is on
the Medication he seems to have aged a lot.
Myself I am on Cholesterol Medication, but I take it every second Day. A Doctor/Naturopath in Sydney said on his Radio program, a few Years ago, that if You don’t have a Heart Condition, every second Day is sufficient. My Reading is 4.2 . To my Way of Thinking the Doctors
appear to be traumatised by the pharmaceutical Companies.
Heide
Delray Beach, FL
I had tried statins, first one, Baycol (discontinued) then Zocor and a few others. I always had the feeling of falling down as I walked down the street. Then the doctor decided to try, as he claimed, “not a Statin”, Fenofibrate (Tricor). It worked fine, brought my numbers way down. As I was in the deep end of the pool (I do water aerobics) doing “hanging” exercises, my feet seemed to go “numb”. I worked my arms to where I can walk and found that I had numb toes. Oh no, neuropathy which I now have with no way of getting rid of it. At 85 I’ll have it for the rest of my life. I immediately stopped the Fenofibrate and for these past 5 years I am using nothing and my new doctor feels that since I have no heart problems I don’t need anything. I am active and I am a care giver.
Judy
Pennsylvania
I have tried Lipitor and Crestor, at the lowest doses, even 10 mg twice a week causes memory lapses and or muscle aches and pains. I finally decided to take my chances with heart disease. Hate to disappoint my cardiologist who means wll. I have Chronic Fatigue Syndrome and am sensitive to many drugs, foods, etc and have read that CFS patients should avoid statins. So far my heart is ok but at 72 I try to maintain healthy diet with vitamins and exercise as much as possible with CFS.
Susan Dallessandro
Indiana
I am exactly like Matt is when it comes to statins. I have tried every dose and every brand. I felt like I had a severe case of the flu! I can not tolerate statins at all. My doctor has me taking homeopathic meds so I hope they work. New blood test soon to find out. I am also on Niatab and a new med. with no side effects called Bergamet. My last doctor kept insisting I take steroids. She would not believe me when I told her that I can’t take them. She is no longer my doctor!
Carol
WV
I took the various statin drugs from1970 to 2006. In 2006 I experienced pain and lack of strength in my upper legs when climing elevations above 600 ft. I gave up hiking mountains since that was giving me a very hard time I refuse to take any kind of statin since then and am trying to build up my leg strength.
Mary B.
austin, tx 78759
I was on 80 mg. of pravastatin (a generic statin, )when when I realized I was suffering from cognitive decline. I could hardly function due to not remembering what I was intending to do, what I had done, or where I had put something. I was doing things like putting the jar of peanut butter in the refrigerator instead of the pantry and other similar mistakes. The higher the dose, the worse the mental dysfunction. When the dosage was reduced to 20 mg., I could tolerate it. It took me a while to realize that my mental decline was directly related to how high a dose of the statin I was taking, so hope this helps someone experiencing similar symptoms to realize the cause….
Tammy
Puyallup. Wa
I have also tried numerous stations and due to the severe side effects I have had, I now refuse to take them. Red rice yeast now bothers me too. Trying diet and exercise as well but cholesterol still not low enough. No matter what I will never take another station. I am 52 and have no health problems. Both parents have high cholesterol as well. I feel the number gets lower every time I go to the Dr. Wasn’t 200 level ok not so long ago?
Lon
okla
Satins ave caused me so much pain, hard to sleep at night, it’s been 6 years now and it just gets worse….been off for approx. 8 years and have taken all the brands that were available…….bad drug.
Carol
Marietta, OH
My husband “Paul” is 75 years old. He took Lipitor and Crestor for years experiencing some muscle aches and pains. And then I noticed changes in his short-term memory a couple years ago so he stopped taking Crestor. Since then he has had an MRI and a neurological study. Both showed the normal aging of a 75-year-old. His memory is getting increasingly worse and our doctors say there is nothing they can do for him. He has been taking Namenda. He also suffers from confusion and anxiety. We used to travel but no more. He still drives but I have to be vigilant when he becomes confused to tell him which lane to be in or how to get to where we are going. We blame it on Crestor since we had been hearing for a couple years that some times it causes memory loss. His long-term-memory is now also affected. Thank goodness we traveled while we still could.
Grace
TEXAS (TX)
I am also intolerant of statins. My endo presribed pravastatin and simvastatin. I had severe muscle pain and almost called 911. Could not stand up on my legs. Pain did pass, but left me weak and limping. Endo said NEVER take statins again. I do not take them. Have added “good” fats to my diet – avocado, EVOO, nuts, olives, salmon. These have kept my LDL in check. I do not consider the risks worth an extra month of being alive. Thanks for keeping everyone advised of options.
Bonnie West
My Dr. put me on flush-free niacin years ago for lowering cholesterol and it was and continues to be very effective. I could not tolerate any statins. Recent studies have shown that inflammation rather than cholesterol cause more heart problems. My father maintained a cholesterol reading of 165 without any meds and had 3 heart attacks and died on the third one at the age of 72. I am no Dr. but personally that “Big Pharma” controls the statin industry. Quality of life is worth something.
Thomas
ny
I have also been placed on all of the statins with severe leg pain that prevents me from exercising. Sometimes I really hate the medical industry in that their advise is all over the page. I have read several books that contradict each other in terms of cholesterol. I have been recommended to take Repatha since I cannot tolerate Statins. I have been an ovo-lacto vegetarian for 30 years. I don’t want to be the lab rat taking this new medicine. The BMJ article opened my eyes again to the reality that I am in charge of my life not the medical profession. I am now eliminating all milk, cheese and eggs from my diet and going Vegan. I meditate and practice mindfulness. I know I am not getting out of here alive; death is inevitable for all of us. I never had a heart attack but did have a blockage of 99% of the “widow-maker”in my heart that was stented. No more of all this just for a few extra days of life. I do not trust this new drug. Thanks for a good article.
Marie - Sweden
I have never taken statins – nor anything else – to try and lower my cholesterol. As a matter of fact, I don´t even know my numbers. I am not interested. Neither have I avoided eggs, butter etc.
I live in Sweden. I have seen statin sufferers and heard about may more.
My mother was prescribed Zocor (=simvastatin) around 2002 (she was over 80) and, after some time, she was prescribed sleeping pills – as she had sleeping problems. She was also suffering from weakness in one of her legs, muscle cramps and aches.
To make a long story short – her doctor refused to see the connection – but I started to look for information and realised that this was quite a common story – no matter what the package insert said. She stopped – and was lucky that she didn´t get any permanent damage. She is still going strong – soon 96.
I wanted to encourage people to look for “alternative” information on webb sites and in books and try to make up your own mind.
When I have read an interesting book I give it away to someone in the medical field – to someone that I feel, at least, have a genuine interest. The last book was – Statin Toxic Side Effects – by David Evans. It has abstracts from 500 critical statin studies/reports and is written in “easy” language.
I often visit Dr. Malcolm Kendrick´s site and I really enjoyed his last book – Doctoring Data, funny and serious at the same time.
I hope that Peoples Pharmacy will compile a book with nothing but statin stories one day.
It seems the medical agencies, doctors etc. don´t want to recognise the statin-suffering.
flo
New Jersey
thank you for the articles and books as well. I’ll make sure to take a look at all of them since I’m on the fence about taking statins but doctors insist on doing just that.
Mildred
Statins are dangerous. I was prescribed a statin, of which I did not have any reaction, however, I refused to take them. I am on a supplement for seven years without any problems what-so-ever.
William
Virginia
I have recently been reading that cholesterol may not be the principal contributor to heart problems as we have been led to believe. The articles indicate that the Framingham studies from the early 1940’s which were used to support the the conclusion have been found not to be the culprit as had been thought. What are your thoughts?
Michelle
Charlotte, NC
I took statins for a while and they did seem to be lowering my cholesterol levels but I started experiencing extreme hand pain/cramping that would wake me in the middle of the night. I stopped taking and am following up with my doctor
Paul
New Hampshire
As a pharmacist myself and someone who had very severe myopathy and neuropathy after taking 3 different statins. Once again the cardiologist was adamant that I take something for my high cholesterol and Praluent would be the solution. I started doing some of my own research. Barbara Roberts a cardiologist has written a book about statins and cholesterol. She questions the whole theory of cholesterol causing heart attacks and feels the statins are just about useless especially in women where there never has been any proof that they worked for primary prevention of MI.
What bothers me about Praluent is I have never seen a good analysis of how much cholesterol the body needs. Cholesterol is involved in the structure of every cell in the body, as a source for the steroid nucleus for many hormones. I am betting that getting carbo under control and exercise will keep me going into my 80’s.
John
Palm Beach Gardens, FL
I also cannot tolerate statins. After taking one for 20 or so years and having serious sciatic nerve pain and multiple injections in my spine to relieve the pain, It also did not stop[ me from having to get a stent about 7 years ago. I read your info on statins and testimonials on my local NPR station from your followers. I got off statins and was pain free within 2 months. I now take 1000 mg of niacin, eat pretty much a carb free diet with mainly grilled chicken and fish, salads and fruit. The niacin does not work as well as the statin but I do not experience the sciatic nerve pain anymore. I wish there were other options, but praluent at $14,000 a year does not fit my budget.
Jim
Southern Calif.
I’ve been prescribed statins for about ten years. Two years ago, I started having severe muscle pains, and muscle deterioration. When I complained to my doctor, he had nothing to say, so I just arbitrarily dropped the statins (my doctor didn’t have much to say about that, either) and gradually started to modify my diet with fewer fats and sugars, and more greens. I’ve lost weight, am regaining muscle tone, have more energy, less lethargy, and am scarfing grapefruit (my favorite fruit) and apples which fight cholesterol.
Margaret mary
Chicago. And Florida
I had to stop statin a few years ago because of the incredible pain. Told my doc I would prefer an early death to spending the rest of my life as a cripple and zombie, as it also affected my brain. And i meant that, my life was so miserable. Mayo clinic article said exercise made it worse, it certainly did, and pain releivers had no effect either, also surprisingly true. So i couldnt get the cardio exercise i needed. So I stopped the statin and i got better, but slowly.
Docs still wanted me to take statins, cause i have two completely blocked arteries, one 70 pct blocked but one 100 pct open (the left ventricle where they used the mamary artery , not a vein like the others). I had bypass surgery a few years ago and the bypasses failed. Not too much to be done here. So we really want to do everything we can to keep those remaining arteries open.
After over a year of feeling better i figured my liver had cleared out enough so i decided to try a small dose again as when i had the smaller dose of 20 mg there was not a problem. Only when we increased dose to 40 mg that i began to have the problem. So hopefully the smaller dose will be ok again.
I wonder if others have found the dosage to be important.
Victor
West Palm Beach, Fl.
I went off simvastatin due to muscle aches, & cramping. Dr. put me on pravastatin, now after approx 8 months I started having a leaky rectum. just fluids when I am sitting. When I complained, the Dr. said that he has had a few other complaints of this. He offered me the option of stopping the statins. I have had a previous cardio episode, but I stopped the meds.
Victor K
Barbara
Texas
I have not tolerated any cholesterol medication. They provoke muscle pain and extreme swelling in my legs and ankles. I was recently diagnosed with hypertrophic cardiomyopathy and with the gene mutation that blocks the absorption of folic acid to methyl folate. I also have genetic hypercholesteremia. I wonder if the issues with statins and their predecessors are linked to genetic chemical imbalances and if studies have considered these concerns.
Vince L
St. Paul Minnesota
I have been on Lipitor since its release on to the market. I have also been diagnosed with hyperlipidemia. I started at 40 mg and was increased slowly. I learned that I can not tolerate anything over 60 mg. I would like to know if taking one of the new medications is a better choice since I do have issues with the statin. Has anyone had a similar experience with a statin? I am curious if a natural remedy is a better treatment. Can a person maintane a good LDL level on a natural remedy? I have been told that I am one of those unlucky people who can eat an excelant diet and still have high cholesterol. I am a little skeptical about this statement. can anyone chime in, Please.
Jack
Silk Hope, NC
I had considerable muscle/joint pain from taking statins. An emrgency-room doctor suggested I stop taking the med for three weeks while taking co-Q10, then resuming the statin concurrent with co-Q10. Like magic, the muscle pain vanished and stayed gone until I tangled with a tick with a bad attitude (and maybe a belly full of parasites of some sort).
Caroline
I have been on statins for years, atorvastatin 80mg and ended up so confused it was dangerous. I begged my dr to take me off them and he did for 3 weeks and blood test after 2 weeks. My mind cleared for the first time in years. I do 7 different exercise/dance classes and 2 gym sessions a week plus walk my dog for at least an hour a day. I have lost over 2 stones and still losing. My diet is healthy now. I went back for bloods result and dr told me still a bit too high. He put me on 40 mg atorvostatin. 2 weeks in and I’m a mess again. I went shopping at supermarket and left half the shopping on the trolley and pushed the trolley back in the bay! I was dropped off at my home after a cinema trip and carried on walking down the road instead of to the house! My muscle pain has returned and have a constant hissing in my ears. I dropped a letter to my dr yesterday saying I am never ever going to put another statin in my mouth. They ‘work’ by taking cholesterol from your liver and brain etc and this is why some of us are ‘living’ with ridiculous symptoms. There should be warnings on the boxes of tablets and warnings from your doctor that statins can seriously damage your health!!!
Jimbo
Bradentom, FL
When will these Crackpot Cardiologists admit that many of us are extremely allergic to any dosage of any statin? My type 2 diabetes, neuropathy and, worse, my vascular Parkinsonism are all attributable to Zocor. The quacks will never admit these things and will continue to insist of people taking them.
Marie
I too suffer from unbearable muscle and joint pain when taking statins and all over feeling of unwellness. I recently went through six months of intollerable pain when on 40mg of pravastin for a cholesterol that was over 300. My sleep pattern was non-existant as I would awaken in pain every 1-2 hrs. I do not like taking sleeping pills or pain drugs but I had to resort to that at least twice per week in order to function at all.
My recent lipid panel was much improved so I insisted on cutting back on the statin and am substituting red rice yeast in addition to just 10mg of the Pravastatin. After just a couple of weeks my pain is much less and am beginning to get longer periods of sleep. I am going on 76 yrs. old and hope not to live in misery caused by such prescriptions. I have no history of heart disease but both parents, who smoked and drank alcohol, died at fairly young ages and though I do not have that lifestyle my drs feel it is significant for me to be cautious.
Mary
My doctor is very excited over Repatha for me. I cannot and will not tolerate statins. (If I cannot exercise, what good are statins?) He made an application to lower the cost but I still do not know how much this stuff will cost me. I am very concerned over the side effect of “fuzzy thinking”. No where can I find out what this “fuzzy thinking” consists of. According to what I have read of the trials of this drug, there is about a 1% chance of getting fuzzy thinking from taking it. With my luck, I would be among the 1%.
At age 75, I still have an active intellectual life and my brain thinks quite well, thank you. However, If my brain were to develop this “fuzzy thinking”, I would be extremely upset. Without a brain that can think at my current level, I would be extremely upset and would rather not be alive.
I have asked my primary care doctor and my cardiologist to find out exactly what this “fuzzy thinking” is all about. No answers yet.
So my quandary is: Should I avoid this drug or take it? In the rush to profit from these drugs, did the drug companies thoroughly investigate the side effects?
Graedons, I would appreciate receiving any information you can give me.
Anne
Excellent information, thank you!! My family has a history of high cholesterol and high LDL. Most are on a statin with a good success rate, unfortunately I cannot tolerate the drug in any size shape or form. I’m careful with my diet, am a serious cyclist, workout at a gym, and practice yoga. With all that my cholesterol and LDL are through the roof. About six years ago I began having chest pain during hard bicycle rides. Tests showed blockage in a main artery which led to having three stents put in. Since then I am back to my usual level of exercise, meaning gym work, and long hard bicycle rides with the group. I suspect this has saved my life. My cardiologist now wants me try Praluent which of course I’m willing to do, when and if we get approval from my insurance company. I’m keeping my fingers crossed!!!
LM
SC
Because of a family history of heart and blood pressure problems, I have been taking red yeast rice (natural statin) instead of prescription (synthetic) statins for 15 – 20 yrs. now to keep my cholesterol within the range my doctors want. It works and I have no side effects. I have added an easily available prodct, CholestOff (Nature’s Balance) to this regimen for more control over the past couple of years, which also seems to be helping. I am now 65 yrs. old and have not yet had heart problems. I also take an herbal product to keep my blood pressure down and it also works.
Sandra
San Tan Valley, AZ
My doctor insisted I go on statins. I didn’t experience muscle pain but I had extreme issues with short term memory. It got so bad my husband noticed. I took myself off of Med and within 2 weeks I was back to normal. I’m keeping cholesterol low with weight loss, diet and exercise. So far so good
Wayne
Brandon
The quality of life reduction with statin drugs should be a consideration. If you are turned into an invalid by the statin drugs is is worth adding a few years? Most if not all exercise is limited by statin drugs. As a senior athlete Crestor was devastating. I quit Crestor and went on a natural program with decent results. I am now on Praluent with amazing results and no side effects.
C
The question I have is does lowering cholesterol really made a difference with prolonging life that would make it worth the cost and side effects of taking meds to lower cholesterol. When I look at the data I have read about it, does not seem worth while.
I think if the people would eat better and do some mild exercise, IE walking it would better help them achieve a longer life.
Also I am thinking that inflammation in the body has a lot to do with all over health and organs that work.
Howard
Florida
If cardiologists and patients would educate themselves on this “myth” about lowering cholesterol, less people would have to suffer from the treatments. A previous People’s Pharmacy show guest, cardiologist Stephen Sinatra, explained his journey from believing that everyone needed their cholesterol lowered to realizing that it’s a myth that lowering it prevents heart attacks and strokes. He even wrote a book, The Cholesterol Myth, which goes into detail about why our bodies NEED cholesterol, the tests for inflammation that are MUCH more important than cholesterol for predicting heart attack or stroke, and all the natural treatments for optimal heart and circulatory health. Every cardiologist should be require to read that book…but then, the multi-billion dollar statin drug industry would be negatively affected, so I doubt they’d ever “allow” that to happen.
Diana R.
Calverton, NY
In 2004 I had a TIA. I recovered fully. I was put on a statin drug. Soon after, like Matt, I was having a low grade ache in my lower back, hips and extreme pain in the muscles of my arms and legs. Because of the TIA I was told I had to take a statin. And so began my cardiologist trying me on every statin drug on the market! All with the same side effect. I too, took myself off the statin. And within a few weeks I was no longer in pain. I was told to take the statin once every three days. My cardiologist said, “some statin is better than no statin”. There was no change in my condition. I could hardly walk; had difficulty going up and down stairs and getting up from a sitting position. To exercise was extremely painful and I couldn’t ride my bike.
I complained to my primary care doctor, who I’ve know for almost 20 years. He saw how the statins were ruining my quality of life. Knowing how active I always was. He told me about Praluent. The new cholesterol lowing drug you inject once every two weeks. I only started taking Praluent February 7, 2016. My pain is almost totally gone and I am anxiously awaiting the results of blood tests to see if my LDL number is down.
Anne
I’d really like to hear the blood test results after some time on Praluent.
A.
florida
what can you tell me about talc powder and cancer?
Rick B
Unicoi, Tennessee
I was on Lipitor for 15 years when I finally developed serious muscle problems. I actually torn several different muscles from my shoulders. My doctor suspected the Lipitor might be causing my muscle problems and he stopped the lipitor immediately. My cholesterol levels skyrocketed to unsafe levels. The doctor wanted to try Lipofen which is not a statin. Lipofen is a Fenofibrate. I’ve been on it for two years and my cholesterol levels are back to being good. I also now drink fresh grapefruit juice which I could not drink with the statin drugs. I have not had any further problems with the muscle problems I experienced with the statin drugs. It appears that Lipofen is working well for me. I’m closely monitored and thus far this drug is working good and I have none of the previous symptoms I experienced. I do not know or understand the downside of Lipofen. Be interested in following this thread.
Steve Schott
SLC, UT
I can’t take statins due to the pain issue. My Dr really wanted me on them as Mt cholesterol close to 200 and I weighed 400 lbs+.
Fortunately my Dr is well read, he likes to know and knows I research reliable sources.
I self medicate within ranges he and I discuss. Rarely is it a negotiation. At that Same time I was talking on average, 700U of insulin for diabetes type II. I have severe depression and GAD.
In late 2014 I had an opportunity for Bariatric surgery. (insurance and our of pocket expenses lined up so I could afford I it.)
I lost most of my weight on the first 8 months, but I continue to lose, but it is allowing down. When I left the hospital I was off insulin. I did not take diabetic drugs and still don’t.
Based on the questionable benefit of statins as stated, statins are listed as an allergy on my chart. I have almost lost half of my peak weight.
For many, statins are bad news. I am fortunate my Dr is well read. I imagine he has taken some of his patients of statins. As always work with your Dr.
Dona W.
home
I have been put on every statin there is and can’t tolerate any of them. I don’t believe they are anything but a pharmaceutical company push for dollars. I have told the doctors I refuse to take them. I have tried red rice yeast and that even eventually caused me muscle cramping.
PP
When I was on a Statin, the Nurse practitioner also prescribed CQ-10 to relieve the body aches. Let’s hear it for the Nurses!