Some reasons why the side effects of statins are likely to be much more common than official statistics suggest

I saw a patient recently who suffered from mental symptoms (poor memory and inability to find his words) quite soon after commencing statins, and his symptoms resolved quite soon after discontinuing the drugs. He might be imagining his issues or suffering from a ‘nocebo’ response (the opposite of a placebo response), but he and I reckon the most likely thing is that his brain has suffered from the side effects of statins.

When side effects appear to come on quickly after taking a drug, and resolve quite quickly on stopping it, it’s generally easy to work out what’s likely to be going on. However, the side effects of drugs can take some time to manifest, and this is certainly true for statins. A recent piece of research makes the point that some statin side effects can take even years to become apparent. The authors of this study make the point that for a given number of people taking statins, the total number of people suffering from side effects creeps gradually upwards.

I was interested to read about a recent review in which the frequency of adverse effects from statins was assessed over time [1]. The authors of this study make the point that when side effects occur, these can often come on quite soon after therapy is commenced (just as in the man referred to above). However, they also point out that side effects can be delayed for several years too. The relatively short duration of studies leads the authors to conclude that it is: “…impossible to determine with certainty the frequency of long-term side effects with these drugs.”

In reality, though, there’s a pretty good chance those who start statins will not be taking them in the long term. That’s because about three-quarters of people who start statins promptly stop them within a year. And last year, a poll conducted by drug company Eli Lilly discovered that the most common reason for people discontinuing their statin was side-effects. In fact, 62 per cent of people cited this as the reason. By my reckoning, it seems that getting on for half of people will stop their statin within a year of starting because of side effects.

Despite this sort of data, we are often assured that the side-effects from statins are ‘rare’. In fact, if you look at the studies in which people are treated with statins, this generally appears to hold true. However, there’s a number of ways in which the design of studies can downplay the risk of side effects. Here’s a few:

1. short duration and ‘early termination’ of studies (this also tends to exaggerate benefits)

2. screening out those susceptible to side effects before the study begins

3. logging side effects only if there’s extreme deviation from normal biochemistry (some studies only log side effects once biochemical markers are several times the upper limit of normal)

4. not looking for certain side effects in the first place

These devices help explain the disparity between what studies show in terms of statin side effects, and our apparent experience in the real world. My own experience (and that of many doctors I speak too) tells me that statin side effects are much more common than official statistics would have us believe.

References:

1. Huddy K, et al. Do the frequencies of adverse events increase, decrease, or stay the same with long-term use of statins? Curr Atheroscler Rep. 2013;15(2):301

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22 Responses to Some reasons why the side effects of statins are likely to be much more common than official statistics suggest

  1. nonegiven 7 March 2013 at 4:06 pm #

    I stopped statins because I didn’t want my LDL to be 29. (29 mg/dl = 0.74994 mmol/l)

  2. Jo 8 March 2013 at 8:30 am #

    Yeah, I stopped taking my statin after about 6 months due to memory loss. I didn’t report it to my doctor because she had told me that I had to keep taking them for the rest of my life and that they had no side effects. I wasn’t in the mood to argue, so I just stopped taking them. Very few people will argue with their doctor so I imagine there is huge under reporting.

  3. Jackie G. 8 March 2013 at 9:32 am #

    I was put on statins for life because I was told I had hyper-familial cholesterol and cardio vascular disease. If I didn’t take them, I was told, I could have a stroke and in fact my cholesterol count even with them is higher than considered average. However, I , too, am finding that I
    can’t find certain words and my memory is deteriorating. I am worried about taking them because even if I stopped tomorrow, I am worried about the long-term effects but I am also worried that my doctor is right.

  4. kev 8 March 2013 at 11:18 am #

    While I’m not a doctor, I would never continue taking a pill that gives me memory loss or other side effects that involve the way I behave. It just scares the hell out of me.
    Jackie, you’ll have to make the decision yourself in the end, but I think it’s best to look for another doctor.
    My aunt took statins for a short period of time. She got cramps and immediately stopped taking them. Surprise: She didn’t report it.
    I can understand, though. I don’t wanna argue with a doctor, either. I think that many of them believe that they are always better/smarter than their patients. I think that prevents many people from telling the truth. Good doctors are doctors that don’t look down on their patients.

  5. Maura 8 March 2013 at 11:57 am #

    My husband got Dementia FTL at age 60. For family history reasons we was on statins. One drug in particular called Tredaptive was given to him. He has been in care now 18 months. I received the letter from heart specialist last week to say drug was being discontinued and that he was part of the trial. I never knew that. I hope he did. When he took it at night he would quite literally go red all over. I never thought that was right but he did report it to consultant. He started having poor memory loss a few years ago. He used to do all the cryptic cross words but I was amazed when he stopped. It turned out that they frustrated him when he could not think them through. He was like Morse with then always besting his time performance in solving them :-). Whether or not there is a connection I guess I will never know now but I am unbelievably sad at the loss of my best pal and dearest husband who just about recognises me now, two years into this mean cruel relentless disease We must continue to share our information

  6. Sue Gooch 8 March 2013 at 12:15 pm #

    My husband too a BP reducing medication for several years then one day started coughing with no associated illness. He coughed for 3 months before he went to the GP who said oh that will be the BP pill and changed it!

    The next pill also brought side effects so that was replaced. Since managing to lose weight his BP dropped and he doesn’t need the pill! Thank goodness. I wish he’d stop the statin, I think it affects his memory.

  7. TJ 8 March 2013 at 7:03 pm #

    I am a retired surgeon and quit taking this garbage about two years ago. I had a frank discussion with my internist, a wonderful man, and I’d rather take the chance of keeling over than going without memory. Incidentally, my mentation has improved greatly since I stopped the pills and some, not all, of my muscle pain are better. Never again!

  8. Hilda Glickman 8 March 2013 at 7:10 pm #

    See Sinatra ‘The Cholesterol Myth’. It is a great book.

  9. Hilda Glickman 8 March 2013 at 7:14 pm #

    If people go off things and don’t tell GP then how can we know that there are side effects? Doctors are there to supply a service like plumbers or electricians. We cannot just hand over our bodies to them like we hand over the pipes in our house to the plumber. Our lives are too important for that. Stop seeing your doctor as someone up there. They are often wrong and it we who suffer from it.

  10. David 11 March 2013 at 4:03 am #

    I also suffer from familial high cholesterol and my doctor wanted me to take statins but when I pushed back and said I was worried about side affects and really wanted to find a natural solution he gave me information on Red yeast Rice and Omega-3. It turns out that all statin drugs are derived fromt the active ingredients in Red Yeast Rice and there is really good clinical data supporting this natural combination and it doesn’t have the high rate of side effects associated with statins.

    Also note that the FDA finally added: potential loss of memory, increased blood sugar and risk of type II diabetes along with muscle pain to all statins last year.

    So I’ve been taking a natural supplement that combines these ingredients and following a high HDL “good” cholesterol diet along with getting enough exercise every day. I’m happy to say my LDL cholesterol is down over 40% and my HDL cholesterol is up over 10%. HDL is a tough one – I eat nuts everyday for a snack and try to eat avocado as much as possible.

    You don’t have to take statins to lower your cholesterol – there are great natural products out there that will help you out.

  11. Jean 11 March 2013 at 8:09 am #

    I bet that if you take any old peoples’ home most of the residents will be taking a statin, a lot of them will have memory problems and most will have muscular pain. I wonder if stopping statins for older people wouild actually improve their quality of life.

  12. Janet 15 March 2013 at 2:14 pm #

    Side effects or “adverse drug reactions” are MASSIVELY under-reported. See this meta-analysis: http://www.ncbi.nlm.nih.gov/pubmed/16689555
    Why? People are afraid of their doctor/unwilling to bother their doctor/even if they inform their doctor, they are told to “just keep taking the tablets”.
    Patients who don’t get better, or actually feel worse when taking their drugs, are all too often seen as – and made to feel – a sort of nuisance by their clinicians.
    And Jean – you are right – I read recently that in one nursing home the experiment was done to take newcomers off all their medication – and many of them were immediately a lot better!

  13. Janet B 20 March 2013 at 5:51 pm #

    After about 12 years I stopped taking statins at the back end of last year and have not regretted doing so for a minute. I feel so cheerful now it makes me realize I have been depressed for years. In addition, the agonising nightly muscle cramps are a thing of the past and my hair which became much thinner when I began the treatment is now growing again, with lots of new growth to be seen at the temples.

  14. Jackie G. 23 March 2013 at 1:01 pm #

    I am grateful for Janet B’s remarks. In addition to memory loss, forgetting words and names and pain at night, I have been terribly depressed. I put this down to my age but now I realise it might not have been. I am still taking statins because my doctor told me I had to because of hyper familial cholesterol. I admit that most of the close female members of my family, including my mother, died of strokes at around 70 years, so I am rather afraid to leave them off, although there is such good evidence that I should. I just don’t know what to do.

  15. frank weir 23 March 2013 at 1:26 pm #

    I developed foot drop from a neuropathy after several years on Simvastatin and muscle cramps. When I asked my GP if the foot drop could be statin related he was quite nasty and dismissive that “statins dont cause this.” But the doctor who did my electro myelogram and physical therapist could not explain the cause and suggested I cross my legs too much! I DO have type 2 diabetes but through low carb eating my A1c was normal at the time this developed. My point is if doctors like mine refuse to even consider statins as the source of patient complaints then they are not reporting that to researchers and then you don’t see or hear any evidence of side effects. Self fulfilling prophecy. They’ll come up with ANY other explanation, leg crossing, rather than consider a drug side effect. Also, I have no heart disease in my family history but lots of Alzheimers yet this was not considered when I was automatically put on Simvastatin, a powerfull statin. I had memory issues with this drug too but that has resolved as well as the neuropathy after quitting this junk.

  16. frank weir 23 March 2013 at 1:38 pm #

    Allow me to add both the EMG doc and physical therapist said my neuropathy did NOT present as diabetes related neuropathy. Didn’t look like it, didn’t involve the same nerve paths and muscle groups. My GP listed his diagnosis as “neuropathy of unknown origin.” Statin drug salesmen can continue to sleep well.

  17. Phil 14 April 2013 at 5:25 pm #

    My father’s cholesterol was 140, and my mother’s was North of 400, yet Mom had no cardiovascular issues, and Dad had two angioplasties, a five-way coronary bypass, and carotid artery clean-outs. While I am by no means a critic of the profit motive, I still think 90 per cent of the concern over serum cholesterol levels is ginned up by the marketing departments of the various drug companies involved.

    It doesn’t matter whether it is cholesterol, blood pressure, or diabetes. Whenever a new drug therapy becomes available, the threshold for what is considered to be an unhealthy level is lowered. The studies involved in setting those recommendations are often undertaken by “independent” organizations like hospitals and universities, and funded by drug companies. While the institutions may consider themselves independent, they are dependent on the funds generated by their research departments, and need to be friendly to their corporate benefactors to maintain a steady stream of incoming research dollars.

  18. Sandy Angove 22 April 2013 at 3:15 pm #

    I was prescribed a statin and when I complained abut the side effects was in effect told I was lying. Switched to another -side effects worse so stopped but saw no point in going back to GP. Recent cholesterol test result = 9 so I think I will explore natural alternatives as well as going on Paleo diet.

  19. Viv 23 April 2013 at 4:51 pm #

    In 1999 I was diagnosed with ME/CFS, which has major symptoms of muscle pain, fatigue and memory loss. Two years later a blood test showed me to have raised cholesterol levels. My blood pressure was (and remains absolutely normal, and I don’t eat a high fat diet, but because of familial history I was prescribed statins. I have taken them even since (over ten years). During this time all my ME/CFS symptoms have become worse, especially memory loss. Then about three years ago I noticed numbness in my feet, and was diagnosed with peripheral neuropathy. Neither the consultant nor the GP mentioned to me that this is a side effect of statins. However having recently read several books which discuss the dangers of statins for those who do not have heart disease, I decided to stop taking them. I am feeling amazingly much better. My memory is already improved and my leg pains are much reduced. I shall be interested to see if this improvement endures. However, given the worry about peripheral neuropathy, I do not intend to take statins ever again. I am just horrified that not one of my medical advisers over all these years has ever mentioned statins side effects to me, even during the recent loss of feeling in my feet. The neurologist to whom I was referred for this was told I was on statins, but just laughed and said ‘you and the rest of the world.’

  20. Martha Biddle 8 May 2013 at 9:02 pm #

    I was prescribed statin by GP because of high cholesterol. I have been taking statin for a number of years.I did not realised, it caused me joints pain and chest pain.Also, my bloood glucose was increased after taking statin.
    Last year,I went to see my GP and informed her that I would like to stop taking statin.Since stopping statin, I felt better.No joint or chest pain.
    I started paleo food and attended bootcamp twice, which I lost alot of weight.
    In April 2013, I went for blood test.I was reall pleased that my cholesterol was normal without taking statin and my blood glucose was normal too.
    Martha Biddle
    08.05.2013

  21. Jacqueline Griffin 16 December 2013 at 8:07 am #

    I thoroughly agree with the last comment. I, too, had been taking statins for several years and put my increasing muscle pains and weakness down to ‘old age’. It was only when one of my leg muscles started going into spasms and almost collapsing that I really became worried. Two GPs had told me that the pains couldn’t be due to statins because any problems would have shown up immediately and only then in the legs and said that I absolutely had to take them. An acquaintance who is a doctor of physiology (and teaches medical students) mentioned that he had stopped taking them and that I absolutely must not take any more. I have not been back to my doctor since but
    am nervous about telling her at my next checkup . It may be coincidence but since I gave up the statins I have not suffered from palpitations and the muscle pains are decreasing. I am a tiny bit overweight but am working hard on that and also taking exercise. I do have to take blood pressure tablets because that is very high but they do not appear to cause any problems.

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