I have been contacted by a couple of journalists recently who want to run stories critical of statins.
Could I ask anyone who would be willing to talk to a journalist to let me know, with e-mail address, if they would be happy to share their experiences?
Thank you in advance.
Dr. Malcolm Kendrick 
Are you in the UK. I lost 18 months of my life due to simvastatin side effects.
I have forwarded many responses. I find that most journalists recognize the statin nonsense for what it is. They just end up battling with editors who are fearful of any backlash
Dear Malcolm, I had side effects, and would be OK talking to a journalist. However, I am only in the UK till 6th March. After that I can still be contacted on my email celiagoldie@comcast.net or by phone in USA.
Celia
A glimmer of hope……
I have responded to Dr Kendrick’s request, that I am more than willing to tell a journalist about my experience of side effects form statins. I would encourage others to do the same!
Thank you David, thank you everybody. Personal stories are very powerful
Sent my contact info to Dr. Kendrick and just talked to Lucy Johnston. Hope she can ‘get the word out’ about statins and their dangers.
I would welcome the opportunity to discuss this issue but while seriously ill for five years post cardiac operation which was 23 years ago, regretfully, I cannot now recall which medication I was prescribed without consulting my GP to obtain the information.
In the paper the other day, or perhaps on the web, I saw that some doctor had claimed that only one in ten thousand people who take statins suffer adverse side effects from them. Some numbers proffered to the public are so implausible that really they invite a sharp uppercut as a reply. “How dare you take me for a fool, sirrah?: thump!”
You could direct the journalists to the Thincs web site. There are many articles about statin side effects there.
I have not taken statins. although my (then) doctor tried to bully me into taking them. My husband had taken them and had problems, so there was NO way that I would even consider them.
I took Simvastatin 20mg for two months. My sleep patterns were disrupted and I felt very fatigued every morning and had trouble getting out of bed. All my life I have been an early riser and a “morning person”, motivated for work and appreciative of the dawn chorus. My GP reduced the dosage to 10mg but little changed. I stopped taking the tablets and got back to my old pattern within a week or so. After having read various articles and seen documentaries I can’t bring myself to take statins any more.
After a mild stroke I was put in 80 mg of Lipitor, it made me diabetic, I could not move my muscles and joints were so painful. I was fatigued all the time and to top,it all off it did not radically lower my cholestrol or stop my newest stent from blocking. So I had a CABG.
I am more than happy to speak to a journalist. I’ve suffered all the following side effects
Depression, with suicidal thoughts
Muscle & joint pain
Vision problems
Tinnitus
Dizziness
The 9 months I was on Simvastin was the worst time of my life, it was hell.
Slowly recovering 8 months after my last statin.
Dear all,
I have been sending on details to journalists. I am, once again, saddened by the long list of adverse effects of statins, the determination of doctors to ignore them, and I wonder about the worldwide level of suffering
I am more than happy to speak to a journalist. Suffered from anxiety, brain fog etc.
‘The determination of doctors to ignore them’. Well said – my doctor has one mantra – the benefits outweigh the risks. Hogwash! I am having blood work in late March – have been off Lipitor for about 4 1/2 months. He wanted to switch me to Pravachol but I said no – he said he would give me 3 months. What?? So I am preparing myself for the battle that I know will come but I will NOT give in. I am doing everything I know to lower my numbers (mainly triglycerides) and I’m even exercising now that I have enough energy to exercise. I did NOT have that energy while on statins.
I wonder what is planned – do they want to do face to face interviews, or use email or telephone? Obviously, when I replied to you, I just really gave consent, I didn’t give the details of what happened, although I did post the details here some time ago – did you forward those?
I have forwarded details, no more. Have no fear, any journalist that I speak with – on these matters – is a supporter of my position.
What is alarming are folk who dont believe statins could possibly be to blame for their side effects!! My brother and sister in law for example. I’ve watched them turn “old” in the space of the 6 months since they started taking statins. But they wont have it. Aching muscles, joints, forgetfulness, sleep problems….. My brother in law has even had to retire early (they’re both in their late 50s) because, as he says “he’s getting old” – and that is what they’re both putting these ailments down to. Eventho they were both fit, active and healthy before the dreaded statins. Their GP is simply putting them on other medication to counteract and telling them to accept these signs of aging!!!!! They just laugh at me when I tell them (er… what would I know compared to their GP!!) and refuse to read any of the negative press – even this site, which I’ve tried to show them
This is really sad to hear, and a lot of the statin side effects really do seem to mimic old age – aching joints, aching, tired muscles, and memory/confusion problems! Perhaps this is exactly why the statin scandal has taken so long to surface!
Tell them that I had walked around for over 50 years with a polio leg – until I had taken statins for about 3 years! Then I felt almost crippled, and gave up sporting activities – until I tried stopping my Simvastatin …. and starting again …. and stopping again …. and starting again, and then finally stopping for good. Each time I resumed the statin, all the symptoms came back. It took about 10 months before I felt absolutely free of the damage, but I could feel the benefit of stopping after just one week. Perhaps if you could persuade them to stop for just 2 weeks, there is a decent chance they would see the light. Do remind them (again) that this website is run by a GP, who could have been their GP if they lived in Macclesfield!
It didnt help that brother in law had a minor heart attack a few weeks ago. I commented that the statins werent working then. His reply “But if it wasnt for the statins it probably would have been fatal!!!!”
Confirmation bias and the halo effect. Two of the most persistent forms of type 1 thinking. Hard to escape four billion years of biological programming.
David. I tell people that statins add fifteen years to your life. They don’t make you live fifteen years longer. They just make you feel fifteen years older.
I’ve just heard someone say that they take statins not for lowering cholesterol but because they have psoriasis, apparently their GP put them on statins as psoriasis causes heart disease.
So here we go again watch out all psoriasis suffers
My father who lived to the age of 80 (despite having been a heavy smoker for most of his life) suffered from severe psoriasis, but never had any heart problems – perhaps because he treated his condition with a UV lamp in winter and a lot of sunbathing in summer, much to the dismay of his GP in later years who assured him that it would cause skin cancer. It did not, but perhaps the high levels of Vitamin D also gave him protection from inflammation of the arteries…not provable,of course, but just a thought.
Sunshine is wonderful, and healthy, and the medical profession has got this area all horribly wrong – as well. Sunshine is life enhancing.
It’s a pity that doctors, like the rest of us, aren’t encouraged to follow their instincts – you only have to feel the sun on your skin to know that it is doing you good. (That’s not an argument for sunburn!) But I seem to remember reading that the epidemiologists who argued that Vitamin D deficiency caused more deaths than skin cancer were vilified by the medical establishment.
After six weeks on simvastatin I spent three weeks in East Africa and did not bring the drugs with me. After returning I restarted the simvastatin and within a day or two developed hives and then a swollen tongue and throat that might have prevented breathing within another several hours.
I had an allergist test all food eaten during the several days of increasingly severe reaction with no positive results, and I had never had any known food allergies in my life previously. I then became certain that the simvastatin drug had caused the allergic reaction, and of course had already stopped taking it.
During the following months I developed a chronic pain that started in the shoulder and slowly moved down to the forearm eventually, before finally dissappearing. I have never had another such experience in my life — I am almost certain that this was also caused by the statin.
It is my belief, based upon my own experience and also based upon the literature, that a statin with a short half-life (e.g. simvastatin) is likely to result in more acute adverse effects than one with a long half-life (e.g. atorvastatin) given similar lipid-lowering potency. Maybe that is a blessing in disguise for those sensible enough to heed the warning.
My experience, as posted on Stopped_Our_Statins Yahoo group.
It’s outrageous how we in the UK are being poisoned & abandoned by those who prescribe these poisons. When I had an appointment at my GP surgery recently as I was collapsing in the street & felt seriously ill whenever I walked, I was told that the practice were not treating me & would not refer me privately because I would not take statins! Despite my protestations that I was unable to eat anything or take any medication as that also made me feel seriously ill. I did finally get a private Dr to help with my symptoms.
It now appears that I was & am suffering from statin induced rhabdomyolysis & dermatomyositis!
In the 5 years leading up to this I had suffered from these inexplicable problems:
Chronic & uncontrollable pain from my left thigh.
Bouts of chronic & uncontrollable pain all over my body.
Blood gushing out of my tail end when I ate certain foods.
Both shoulders so painful they had to be strapped to my chest.
Chronic migraines.
Unable to remember my name, or how to use a knife & fork for months at a time.
Foot drop & chronic pain in my left foot/ankle.
Previous dermatomyositis sites erupting.
Electric shocks throughout my nervous system.
Severe bouts of depression.
Left arm paralysed for a year.
The list of serious symptoms goes on & on yet I could never got an explanation for any of it except the shoulder pains which apparently needed surgery. As I wrote above, the GP practice sought to withhold help from me because I refused to take any medication, but in particular the statins!! Eventually an Integrated Medicine GP got me back on my feet with Q10 & many other supplements but I am now unable to walk, stand or sit on my left thigh without the risk of poisoning myself to death & the NHS will still not take me seriously so I’m left bedridden for 90% of my day!!! It took 6 months of bed rest to recover from this episode. But at least all my symptoms do now stop when I lay down all day so at least I’m still here to tell the tale!!
I also want to point out that 20 years ago I was treated with radical chemotherapy & high dose steroids for stage 4 cancer & dermatomyositis over a considerable time. These drugs are renowned for their damaging effects, but I can assure you they are nothing compared to the way statins make you feel. These statins should be regulated in a similar manner to cytotoxic & corticosteroid drugs!
Feel free to contact me. hampshire_hippy@yahoo.co.uk
Hi Malcolm, I think Lucy Johnston did a good article in today’s Sunday Express. She featured my photo, which I hadn’t initially expected; but I could see her point that a photo gets people to read the article. I hope it helps at least a few people. Good luck with trying to get NICE to think again! Celia
Lets hoe that the Statins can finally be recognised for what they are, since being put on simvastatin 20mg many years ago, I have had many of the symptoms, e.g. tinnitus, muscle problems, skin problems, weight gain, disrupted sleep etc., but never attributed any of them to the statins, neither did my GP ever suggest that it may be a side effect. Since having a cardiac arrest (yes while on statins), and you couldn’t get more fatal than that, which without the immediate CPR which my work colleagues kept going for some considerable time until the eventual arrival of the paramedics and the defib machine. Then as I was told, I would get the ‘gold standard’ of treatment, and was moved to 80mg of Lipitor. within a few months i was virtually crippled, I had joked that I would soon be back to my normal walking distance, from my house door to the car!, i did not realise that it would become the truth.
only after self research with the help of various books and websites, conflict with my GP, and self-ceasing the statins, did I find a miracle cure, and was able to walk again. still got a long way to go to get my muscles back to where I was 1 1/2 years ago prior to the arrest with no prior history, or since, (so far).
I would be happy to join in the debate with the journalists.
It’s hard to read the stories of Hants Hippy and Mick Clarke without feeling both anger and frustration on their behalf. I fear we have a huge uphill battle when people like Professor Mark Baker of NICE appear to be working for the drug companies rather than patient welfare.
Dr. Kendrick, it seems that the medical establishment has gotten a lot of things horribly wrong over the years. I am wondering what, exactly, they have gotten right. Also, I still cannot understand why people, after realizing how terrible statins are, and stopping on their own, still go to the doctor to have their cholesterol levels measured, “knowing” that they are going to have a battle. Forget about the numbers, and just stay home, is what I say.
I know what you mean Stacie. It feels like taking a risk. I did ask for my cholesterol levels to be measured because, having read about the risks of having low cholesterol, particularly for older people, I wanted to know how low the statins had pushed me. Luckily, my doctor understood my situation, and took me officially off them. (My total cholesterol was down to 3.10). I will ask for a further test at some time to see if it has gone back up, as I am concerned with the long term implications for my health of my “statin journey”.
3.1mmol sounds low to me, especially for a woman.
When I started taking rosuvastatin (5mg) 7+ years ago, my TC went from 265 (6.85mmol) down to 158 (4.08mmol) inside about 3 months and stayed about that level until I stopped taking it 2.5yrs ago (having experienced a bunch of adverse effects: memory lapses, peripheral neuropathy, gynecomastia and maybe others).
My TC recovered rapidly to a satisfactory range of 201-237 (5.19-6.13mmol), last measured 10-11 months ago. No further problems with the memory lapses. I wish I could say the same about the peripheral neuropathy (thanks to statinated CoQ10 depletion and degradation of myelin sheath it’s probably irreversible).
Dr K, along with Lucy Johnston’s piece on slamming statins on the front page (about time too) was her other piece about NHS England forcing GP practices to train a ‘lead’ member of staff to spot terrorists or patients who could become terrorists. It is bad enough that GPs have to give their patients’ data to the government. Now they have to see patients while wondering if they are would-be-terrorists masquerading as a patients. Whatever next?
I have not been on statins so cannot help with a story but thanks to all who are willing to share their story so that the truth about statins gets out there on more front pages.
Lucy did well. Daily telegraph less so. I am lining up some other things
Today’s Telegraph has a short piece on adverse side effects of statins.
Yes I would be happy to talk to a journalist. I had statin induced rhabdomyolysis.
Essop Hajat
My father took statins and suffered early onset dementia, he’s dead now. My friend’s father is also on statins, he has parkinson’s and rather early senile dementia. Non of these are provably linked to statins, but I believe they are linked. On a related note, my brother took a lot of prescribed drugs (not statins as far as I’m aware), he suffered many now widely accepted side effects. He’s dead now too. I’m not a fan of pharma.
I try to warn people, but they just look at me as if I’m mental. It makes me sick to my stomach to see people and their families being used up for some company rep’s bonus and people just let it happen like the Eloi out of HG Well’s ‘Time Machine’ watching passively as members of their tribe drown.
And the subversion of the science is really annoying. I try to explain about biases, about the fact that statistically significant correlation is a meaningless load of old cobblers when trying to determine the arrow of causality.
What is it about humans? Every other species of ape, they have a member draw attention to a big snake in the grass they all run for the trees, but humans, humans will throw rocks at the lookout.
I’m just glad bastions of sanity can be found on the web in the likes of this blog.
Malcolm,
This is spam – the ‘name’ of the author connects to a car sales site!
David
I would also be happy to talk to a journalist. Only been on statins since heart attack last October (started on Atorvastatin 80g/day)but adverse effects ranging from tinnitus to dizziness, low libido, burning sensations on skin, muscle tremors, poor concentration and lack of “mental speed”. Changed to 5g Rosuvastin per day which shifted the balance but has pretty much the same side effects. Considering stopping them.
Found this today I imagine Dr Kendrick has seen it but hopefully others will find it useful. Is the tied slowly turning?
http://coconutoil.com/deputy-chairman-of-british-medical-association-condemns-statins/
The war on cholesterol is a phoney one. Cholesterol is wholesome and good – all of it.
Cholesterol is versatile substance, and it gains it’s virtues from being quite reactive. Unfortunately ‘reactive’ also means cholesterol can be degraded under certain circumstances, and exposure to air or oxidising agent can result that some molecules of cholesterol become oxidised. There are three possible oxidised cholesterols or oxycholesterols. Cholestane triol is the name given to the one with three atoms of oxygen added.
In the 1970s a team at Albany Medical School became suspicious that the early work involving rabbits and added dietary cholesterol [1] that so influnced the thinking of DR Ancel Keys in the 1950s might have contained a confounding error. They suspected Anitschovs results were thrown by the presence of contaminants. So they replicated Anitschkovs trial but put more care into the design and execution. They prepared batches of pure cholesterol and long with batches of cholesterol contaminated by oxycholesterols and went to lengths to ensure each batch remained stable.
Pure cholesterol fed to captive rabbits induced nothing. Oxidised cholesterol induced atherosclerosis, and cholestane triol was established to be the most potent atherogen amongst them. [2] Just to be clear, cholesterol does not cause heart disease, but cholesterol damaged by oxidation does induce the formation of the fatty plaques considered to be the beginnings of heart disease.
I am afraid the boggart is now out of the barrel.
Statins are prescribed needlessly. They do not target the process and pathway that can lead to the oxidation of cholesterol.
All that pain (from the side-effects) and no gain (no significant reduction in risk – and a rise in all cause risks to boot) and for what? Well, with 7 million adults in the UK on statins at a cost to the NHS of £285 million then somebody is doing very nicely, thank you.
Factions in the corporate sector, yes, and even NICE, are waging war upon us the patients, literally, just so they can remain profitable and satisfy shareholders expectations of a dividend.
It isn’t just that NICEs draft proposals to halve the qualifying risk, calculated under QRISK2, is a nonsense [3], but their entire policy on statins is a nonsense too because the fat/cholesterol hypothesis is pure fiction, with not a shred of evidence to support it.
Dr Kendrick, if you were not aware of the work of Hideshige Imai I suggest you take a look. I will be writing to Professor Mark Baker at NICE to furnish him with a copy. I will be leaving him in doubt what I think of his daft (sorry, ‘draft’) proposals and his policy.
How much evidence do NICE need to ditch their stupid policy, and how much absence of evidence can they rely on to sustain it?
At least the proposals are meeting with some resistance [4], and so they should.
Notes:
1 N. Anitschkov and S.Chalatov, Über experimentelle Cholesterin-steatose und ihre Bedeutung für die Entstehung einiger pathologischer Prozesse. Zentralbl Allg Pathol. 1913;24:1–9.
2 Angiotoxicity and Arteriosclerosis Due to Contaminants of USP-Grade Cholesterol;
Hideshige Imai. PhD, Nicholas T Werthessen PhD, Bruce Taylor MD, Kyu Taik Lee MD PhD.
[journal Archives of Pathology and Laboratory Medicine 100:565-572, 1976.]
http://legacy.library.ucsf.edu/documentStore/n/k/r/nkr20a00/Snkr20a00.pdf,
accessed 08/03/2014.
3 http://www.nice.org.uk/newsroom/news/ThousandsMoreCouldBeOfferedStatins.jsp
4 http://www.pulsetoday.co.uk/clinical/therapy-areas/cardiovascular/majority-of-gps-reject-nice-proposals-to-extend-statins-to-millions-more/20005985.article#.Uxs6zqHbBv8
Dr Kendrick,
I don’t have a statin story; forgive me for the change of topic but I think you’ll understand.
My husband has high blood pressure (around 160 systolic, I think?) and ‘high’ blood glucose (don’t remember the number, but less than 200). So of course he’s on meds, despite the fact neither he nor his family have heart trouble, he’s not overweight, and he doesn’t smoke. His dad died recently, but the man was 95.
Anyway, since he’s been taking this stuff, he’s had repeated episodes where his blood sugar drops precipitously—gets all shaky and I have to find him something to eat and a place to park himself, super quick. Even more alarming, in the past month, he’s passed out twice from low blood pressure. The first time he only got a mouse under his eye (“Thanks,” I said, “people will think I hit you.”) but yesterday he cut the back of his head open (superficial, but you know how head wounds bleed).
It’s perfectly obvious to me that he’s being overtreated, but I can’t convince him: he says doctors know what they’re doing. I’m less and less convinced.
Tricia
Apparently the medical researchers now think that Statins have no side effects.
All line up for your dose please, nothing to worry about.
http://www.telegraph.co.uk/health/healthnews/10693895/Statins-have-virtually-no-side-effects-study-finds.html
I expect you have seen the piece on the front of today’s Telegraph claiming ‘Statins have virtually no side-effects’.
Don’t you just love how the experts try to make out that side-effects such as muscle aches are likely to be caused by other things? Couldn’t possibly be the statins. To those who get muscle aches and other severe symptoms after starting statins this must be like a slap in the face. This view does not explain why the symptoms that started with the taking of statins improve over time once they stop taking statins.
Been away for a week. Seen this nonsense (Ben Goldacre no less). What is he up to, I wonder.
I wish doctors would realise that this sort of PR approach to problems, makes one less and less trusting in doctors! I mean, if doctors are still going to claim that statins have few side effects, how confident would I be if I ever needed a prescription for something else?
Fortunately the Telegraph has published a much more realistic article by James Le Fanu.
The banner headline on the front page of Thursday’s Telegraph assured me that statins don’t have side effects. Yippee!
Ahoy, Doc.
http://pipeline.corante.com/archives/2014/03/14/going_after_poor_published_research.php
Oh dear, oh dear, Ben Goldacre, that’s a bit shameful.
http://www.theguardian.com/science/blog/2014/mar/14/statins-side-effects-study-placebo-ben-goldacre
If your data are rubbish, young man, don’t publish the work. Hell it’s the sort of thing a big, bad drug company might do. Woe, woe and thrice woe!
I won’t be talking to a journalist for that would mean that I would be talking to myself.
I’m doing my part here, in Romania, rest assured!
I had the ‘chance’ to experience statins first hand, with a heap of adverse effects…
Lucy Johnston is doing her best – there was a piece in yesterday’s Sunday Express and the newspaper (but not the online version) included an interview with yours truly…
http://www.express.co.uk/news/health/465121/Patients-are-not-being-told-of-statins-risk-says-expert
Ahoy, doc. The Old England Journal of Medicine carries an interesting piece.
http://www.dailymail.co.uk/health/article-2582867/Saturated-fat-DOESNT-cause-heart-disease-all.html
I wonder how many times the saturated fat myth will have to be killed before it ever dies? Anyone who ever looked at the research without distorting goggles on has known that saturated fat has nothing to do with heart disease for years. Yet, still, the myth will not die.
I always thought it was odd that Goldacre didn’t go far enough in his book bad pharma. He didn’t seem to worried that the theory of action of a particular drug, that’s just a marketing tool in the case of statins as far as I can see, also effects the health of everyone who acts on that advertised theory. But who am I.
I’d like to think Goldacre was performing some kind of scientific aikido on behalf of the public, but I can’t see how when he’s effectively okaying a study that says, “You’re horrible long term side effects are as likely to be all in your head as a result of statins.” Do we really believe that? Boo Goldacre, boo.
I have always been a bit wary of Ben Goldacre. He is pro-statin to an amazing degree, which does not fit with his views on pharma research, and the withholding of data they don’t want anyone to see. There seems to be something funny going on
I guess the question is, as they say in the a lot of the scifi drama I like to watch, “Funny haha or funny peculiar?”
Spokey
I am just now trying to read Bad Pharma but half way through the bock I am now stuck with the same feeling as you have and cannot force myself to go on with the reading. He is, for whatever reason, not drawing the obvious conclusions from his own reasoning.
Thanks Professor, glad it’s not just me who thinks so!
I have written about my 78 year old friend before, who not only developed muscle pain, but a constant, chronic cough. Through the internet I found that it was probably her statins. She came off them 10 months ago and the muscle pain stopped within a couple of weeks. In the last month, the cough has finally totally stopped and I am sure it has probably taken this long for it to clear. She also had two cataract ops whilst on the statins.
Her cholesterol is still over 8, but she is slim, fit, does the Race for Life each year and tells me her foggy brain is now back to normal, another result of the statin. She has no heart disease in her family at all, her BP is normal. She won’t be taking them again!
The effects have been insidious . Slowly crept up on me. First on simvastatin prescribed by Dr in USA 7 years ago. Depression, apathy, no energy to go running which ironically would be more beneficial. Lack if libido, all quite stressful.Stopped taking them after 6 months and quickly got Mojo back. However 2 years ago and back in UK my older brother had heart attack and a quadruple by pass , His consultant said ” genetics count for 70% of CHD. Can’t do much about that but diet and exercise you can”. I got checked again 6 months after brothers op as was breathless during short runs. Angiogram based on family history revealed 98% blocked LAD. So Stent placed and on Statins, Crestor suggested based on previous discomfort. Ok for one year but felt like walking through treacle everyday, tired. Libido gone, ED present. Gave up Crestor. One week – 10 days later feeling better and performing better. 🙂 . Grateful for stent and angioplasty . Am on nicoradil and 75mg aspirin and CoQ10. Side effects of statins sneak up on you .