This was mentioned in today's Times so I got the link to the original article. I think one of the problems is those who have issues shout loudly whereas the majority that have no issues have no reason to say anything.
Statin Intolerance - Overestimated an... - British Heart Fou...
Statin Intolerance - Overestimated and Overdiagnosed
MichaelJHHeart Star
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MichaelJH
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That's an interesting comment to make Michael. My experience is that I went straight onto 80mg Atorvastatin after my first NSTEMI in October 2019 and have had no deleterious effects. I had no prior cholesterol, BMI, or heart rate issues. I have always tried to respond to folk on here asking about people's experience of statins and that's what I've done. There is also the NOCEBO effect to consider. As you put it so eloquently, people will complain readily whereas those unaffected may not trumpet their positive (or non-negative) experience.
NOCEBO I don’t know what this stands for
in reply to LaceyLady
It doesn’t stand for anything, it’s the opposite of the placebo effect, coming from the Latin for ‘to harm’. The placebo effect is when you give someone a fake tablet or treatment that does nothing whilst telling them it’s a medication and they get positive benefit from it, even though there’s no benefit to be had. It’s a case of the mind believing you’ll feel better, so you do, even though there’s absolutely no physical reason for the improvement. Mind over medicine. The nocebo effect is where you believe you will get a negative outcome or come to harm from something, either because you’ve read it in the information or otherwise been told that’s what will happen, and you experience worse effects or problems from the treatment as a result. Just like the placebo effect, it’s been proven to be a very real phenomenon, and reinforces just how powerful our minds are.
LaceyLady in reply to
The mind is a powerful thing. I told myself years ago that ‘I wasn’t having arthritis’ this was because I was told by a medical practitioner that ‘people like me got it’! I have a high bone density.
I have no idea if I have had any adverse effects from Statins, as much the same as many people here I got sent home after a HA with a raft of new meds incl 80mg Atorvastatin.
I'm not happy taking them though, because I don't trust anything I read about them.
The benefits were over-stated. They were vastly over-prescribed.
I hear that they help smooth artery walls, but where is the data ? If you have any links on this, I would be pleased, because I'd really like to be convinced that I should be taking them.
The BHF website has lots of information about the benefits of statins.
bhf.org.uk/informationsuppo...
Though I am not sure whether you'll trust this information as you have said
" I don't trust anything I read about them."
This is two years old now, and had a small sample size, but it’s a UK study that actually demonstrated quite a bit when it comes to statins, the nocebo effect, and human psychology generally:
imperial.ac.uk/news/208436/...
I particularly liked that so many of the patients went back on to statins and were able to tolerate them once the personalised study results had been explained to them. I can’t find the original resource where it explained that to be the case, but that’s actually what they did.
in reply to
Another study quoting relative risk reduction rather than absolute risk reduction. The notion that statins reduce the risk of a coronary event by 20-30% is highly misleading. In terms of absolute risk reduction, statins have been shown to reduce the risk of a single coronary event in approximately 1% of people who take them. Even then, this is not widely believed to be due to a reduction in cholesterol, but due to the proven anti-inflammatory effects of statins in their ability to reduce CRP levels.
So yes, statins do have benefits, but they are not the miracle drug that many believe, and it is for each individual to work with their GP, realise that their GP possibly also does not understand the difference between relative and absolute risk, and make an informed decision about what is best for their situation.
in reply to
The purpose of the study I mention had nothing to do with assessing the benefits - relative or otherwise - of statins, and everything to do with psychology and the nocebo effect in practice. As you say, people have to weigh up the decision whether or not to take statins on an individual basis, and I would never suggest otherwise. I do, however, maintain that the study was extremely interesting when you consider the number of people that experience side effects that they feel are intolerable. Almost two thirds of the participants experienced this, right up until it was explained that they’d reported the same side effects whilst taking a placebo. The human mind is a remarkable thing, and we need to keep the impact of this in mind with all medical treatments and interventions.
in reply to
Oh, I agree. The nocebo effect is very real. That said, the mechanism of how statins can affect muscles is understood. For some it is so slight it is hardly noticed, and no doubt other people put it down to getting old and dismiss that it could be the pills.
I too am on 80mg atorvastatin, have been on it for a year and have had no side effects. While my pre HA cholesterol was 5.6 (not too bad) simce taking it, it has halved my ldl level to 1.8. I'm someone who is not overweight, never smoked or drunk excessively but just have inherited tendency to get sticky gunk in my arteries from my father.
I expect to have the dose reduced slightly to 40mg when my latest blood test results are in.
Hello you,
I think that your observations and your writing of ‘those who have issues shout loudly whereas the majority that have no issues have no reason to say anything’ fits so many situations lately and I humbly agree with your statement.
Been on statins 15 -20!years . Started on simvastatin- no obvious side effects. Was then switched to atorvastatin about 10years ago-don’t know why although they seem to be preferred. Again no obvious side effects. Apparently my cholesterol level was 9.6 beforehand (I’m not from Wigan and I didn’t eat all the pies) now 4ish or some years lower in the test. Can’t remember the splits ldl/hdl. Don’t even think about it except when the blood test comes around.
Like you I have been on statins for more years than I care to remember. Simvastatin at first which caused not unpleasant, but certainly bizarre, dreams. That didn't really bother me and wore off after a while. Then after some years it was changed to Atorvastatin 40mg daily. Apart from the dreams with Simvastatin I've had no side effects.
That would be Kendrick who also spouted nonsense on the pandemic (the name of which one cannot mention).
Just clarify to the uninitiated Malcolm Kendrick is a knowledgeable practicing GP who tends to question the medical mainstream views, whether he “spouts nonsense” is entirely subjective.
Hi Outoftheblues,
I have taken Atorvastatin for nearly 10 years. I have very recently reduced and stopped taking them in order to see where my lipids are without them, and am due to discuss with GP next week. I am hypothyroid which is very well understood in relation to high cholesterol.
It would have been helpful if you'd backed up your sarcasm with data. I don't understand the purpose of your response?
Cholesterol levels are mainly about the liver and this article lays out the general position. Once a person has liver disease there is little that can be done. It is all about what not to do in making the matter even worse. Probably the reason why statins have been brought into the mix is as to which ones to take and which to avoid.
webmd.com/cholesterol-manag...
7 to 8 million people take statins in the UK so even if only 2% have serious problems that adds up to 160,000 people.
Ooh Michael you've wound them up again you naughty boy
And this is your contribution to the forum…. Sarcasm & being judgmental
I agree with you. When things are going well, people don't say anything. They only make a fuss when they have problems. Atorvastatin didn't suit me so I was changed to simvastatin which was fine. I have no need to say anything about it. MY husband was put on statins but he was strongly influenced by reports he'd read in the papers and had decided before he even tried them that they were going to be bad for him so he's refused to take them.
Qualipop - my DH is exactly the same! I was put on 40mg of Atorvastatin after a stroke. My cholesterol levels have never been an issue ( not overweight, don't smoke etc) bit it was probably 'standard procedure' I did start to suffer pains in my wrists and asked my doctor if I could reduce the dose to see if it would improve. She was happy to do that or try a different brand or for me to stop altogether. In view of my history I've reduced to 20mg and seem fine on that so I will continue to do so. BTW I have no thyroid so been on Thuroxine for 30 years.
Statins offer more protection than just reducing cholesterol. Standard procedure after a HA . and plenty of options if one doesn't suit. They've brought my cholesterol down. My GP actually advised stopping mine for a month to see if they were causing problems I had. They weren't.
I can't help you with understanding the difference between relative and absolute risk. As for the muscle problems, it is easily found within seconds on Google. BHF website is a good start. As always, DYOR.
Could you please help me understand your comment 'do your own research'?
How does this provide support or help to others on the forum?
in reply to Milkfairy
I'm sorry this has caused you some trouble. I'll have to agree to differ with you on whether you think my post is helpful. In terms of DYOR, people have a choice. They can either choose to blindly follow the advice given to them by others, or they can educate themselves a little bit and determine if they believe the advice they have been given is best for them. I see it very much as being part of the informed consent process.
Above everything, no-one cares more about your own health than yourself, and on that basis I prefer informed decisions rather than blissful ignorance. Each to their own. I don't see DYOR research as a particularly controversial statement - I'm certainly not advocating to ignore the advice of your GP. There have been times I have disagreed with my GP, showed them why and had them change their mind. Had I not done my own research, I would have followed bad advice on more than one occasion.
Thank you.Living with an under recognised and poorly understood condition, I have by necessity carried out my own research.
I have many times provided references to the relevant articles that discusses the latest research findings about my condition to on call Cardiologist I encounter when I am in hospital.
I now have a formal written admission protocol which I co wrote with my Cardiologist.
I try whenever possible to provide any links to research freely to others when making a comment on the forum.
If a poster makes a comment about such and such research, I will want to know the orginal source of the information. I want to read it.
If no article is forth coming I question the validity of the post.
I feel saying to someone to do their own research isn't helpful in this context.
in reply to Milkfairy
Thanks Milkfairy. I appreciate your response and I'll take your advice on board.
I agree on Google, there are always caveats. It is important to check the data, who is saying it, and who is funding it, and also seeing if there is other data that might contradict or reinforce it.
When I was nearly killed by some "safe and effective" medication, I sat in front of my GP (in some considerable pain) as he literally Googled it and said "oh, yes, it does look like it can do that. Sorry about that."
Hi Outoftheblues,
It's all a matter of risks/balances isn't it, and we are all individual.
Yes, I asked my GP for lowering doses to taper off.
I'm not over-weight. and I don't smoke or drink alcohol. Diet is pretty good, although I don't eat enough oily fish. I don't have the option of stopping for 'heart healthy' food at McDonalds or KFC etc because I am coeliac. I don't expect diet would improve my cholesterol, as you rightly say my liver would just produce more.
I am autoimmune hypothyroid since 2007, and was under-medicated for this for the 1st 5yrs after diagnosis . Then had the HA in 2012. There is a possibility that I do not need statins to control cholesterol. I would like to be happy taking them if I have to, but I'm not. As a female with autoimmune problems & a daughter with type 1, I am at greater risk for developing diabetes, which I have to consider in the risks and balances as well.
"Perhaps you could provide us with links to recognised studies that suggest Statins do not perform in the way they are promoted?" I said were not are......at least I hope that's not happening now (and I'm sure you've seen it all). I would have a lot more faith in them if they hadn't been over-hyped in the 1st place. This is where my trust issues lie.
BHF
Statins are one of the most commonly prescribed drugs in the UK: around 7-8 million adults in the UK take them
Statins have been prescribed to millions of people and are estimated to save 7,000 lives each year in England
I believe the benefit is a bit higher for those of us who have already had a heart event.
Again more sarcasm & rudeness. I’ve reported you to HU
Heythrop51 in reply to
And you expect them to take seriously someone who goes Hidden after reporting someone. Totally childish!
You’ve obviously looked at my profile outoftheblue…is it because I’m a women you feel it is your place to mock and belittle me on this forum. Surely, this is a safe space for everyone to air their views and also for those not confident enough to post etc to harvest the information on offer, or is this subject to your approval and subsequently you agreeing to the information on offer.
Lezzers in reply to
Where on your profile does it mention your gender? I can't see any reference to it?
It appears that Jackson898 has updated their profile.
So it seems!! And interesting changed her name!! I still don't understand why she would accuse someone of picking on her because of her gender when no one knew what her gender was!! Why would someone do that??? 🤔 🤔🤔 Very strange!
"I can't see how any initial "over hyping" has anything to do with it?" It has everything to do with it. 🤦♀️😊
I think it is important to emphasise that side effects should NOT be ignored.
This is quite a good article I came across some time ago, written by a Cardiologist, interestingly he takes Statins and suffers from side effects of Muscle ache -
blogs.webmd.com/heart-healt...
An extract, the last bit in bold i think is important
"Far and away, the most common side effect of statins is muscle aching, also called myalgia. But whether this is due to the medication or the impact of our mind's negative expectations (called the "nocebo effect") is controversial. Some studies have shown that side effects are about the same when a placebo is compared to statins. And based on this, some physicians feel that our minds and not our bodies cause statin muscle aches.
Maybe this is right, but I have a different perspective for two reasons.
I've had a lot of experience with people who have side effects from statins. When I worked at the Mayo Clinic, I (half) jokingly said I saw everyone in the system who couldn't take a statin. I met many people who were desperate to take a statin because they believed the benefits but could not tolerate the side effects.
I also have muscle aching side effects to statins.
It’s possible for my patients and me, the problem is the "nocebo effect," but discounting the symptoms isn't helpful and doesn't make it any less real.".
The over-hyping was marketing to mainly GP's . Gp's being paid to prescribe. The list goes on............
I'm sure that this happens with a lot of meds, but probably not quite as widely used as statins.
"is it really worth the risk of not taking them"
I don't know is the answer, and I haven't made a decision yet. If I can possibly avoid them, I will.
Take care.
I can only speak from my own experience. I was diagnosed with diabetes several year ago and was put on 20mg of Atorvastatin. In 2017 I had a Stroke and after an Angiogram was upped to 40 mg.
My yearly check ups and blood checks showed that although I was struggling to control my blood/sugars my cholesterol etc were at an acceptable level.
In October 2021 I started having Angina pain again, I had a further angiogram and they found my RCA was furred up and I had to have 2 stents fitted although they had to drill them first. The technicians were surprised that in 5 years (after the last angiogram) so much damage had been done.
My statin has now been increased to 80 mg and in only 4 months my cholesterol has dropped a lot and I know this is important as obviously medication will work far quicker than diet alone.
I am lucky as I am unaware of any side effects, my bad cholesterol is currently at 1.8 (from 2.2) but they want it brought down to 1.5, I am not sure if they intend to drop the dose if it does reach that target.
"Although not proven there is growing evidence that Statins help to stabilise the plaques" Yes, I've been trying to look at this, but couldn't find anything concrete. (plaque/concrete...boom, boom) As far as I can tell, its all a bit too woolly ie. Is it because the cholesterol isn't available to plug the damage with calcium , or some other mechanism?
I think we are going to have to agree to disagree on the over-prescribing. About 10 yrs ago, my then 25yr old daughter K had an appointment with a GP who wasn't somebody that she regularly saw. She'd had to rush to get to the appointment, and was called in straight away, K explained that she'd had to run from the car park, up the stairs, and was a bit out of breath. This GP took her bp immediately (didn't take a 2nd resting reading), gave her a prescription for 80mg Atorvastatin, and when she looked at him aghast, his response was that she'd be dead by the time she was 35 if she didn't take them.
K was understandably quite upset by this, and at her next appointment at the surgery she asked for advice from one of her 'usual' GP's, whose visibly angry/shocked response was "You haven't taken them have you?" This is just 1 of many.
"I would ask you to consider carefully?" I will. 😊
I haven't read all the posts on here, as I hate the tone, my personal experience was, I was high risk being diabetic, my gp at the time refused to put me on the ' junk' the specialist advised, I had a heart attack, 2011, still having trouble. But I'm still here, thankfully that gp retired. I'm only on 20mg as higher dose does make me ache so much, I've done my part to keep my cholesterol down, but no matter how low it gets, I've been down to 2.8. I still clot. About to have my 7th angiogram. It is something you need to talk about, but everyone needs to base their choice on their own health. Take care. Moni
If NICE say take them I will continue to take them. Why because I take everything else that NICE recommends for my Heart Condition !!!
At the end of the day it's up to You if you think they are a load of S*** don't take them. Quite honestly, personally I don't really care about joe publics Opinion after all you have no medical training !!! Really at the end of the day if your Cardiologist said you need a bypass would you say I read it on Health Unlocked people have trouble with bypasses so I am not going to bother. I'm going to the under taker instead . Bisoprolol is one of the biggest life saving drugs available now if you read all the S*** on here about them no body would ever take them. Now I will close before I start on Isosorbide another drug just given to people to give them a headache !!!
Regards
It hasn't. I think most GP's do a marvellous job under exceptionally inflated expectations.
Thank you for the link. I will have a really good read.
I tried two different statins both gave me a lot of pain so my GP said not to bother with them. I must admit that I am a great believer in thinking that one should not be told about side effects as they're bound to have them but my pain was real and since I suffer badly from nerve damage after a knee operation gone wrong and arthritis in my other knee, hands and feet I couldn't tolerate any self inflicted pain!
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