# Anti-statin same as anti-vax?



## Eddy Edson (Jul 2, 2019)

https://jamanetwork.com/journals/jamacardiology/fullarticle/2736328

https://www.cardiovascularbusiness.com/topics/lipids-metabolic/fighting-fake-news-about-statins

_While headlines shine the spotlight on vaccine refusal, the same fake medical news and fearmongering also plague the cardiovascular world through relentless attacks on statins. Now websites, books, and even antistatin documentaries spread false information about statins.On 1 popular “health” website,5 readers can learn that vaccines cause autism, learning disabilities, and death. This site also incorrectly indicates that statins cause memory loss, cataracts, pancreatic dysfunction, LouGehrig disease, and cancer.5Many of these sites criticize statin researchers for links to “big pharma,” while simultaneously promoting online marketplaces selling natural alternatives, including supplements, foods, essential oils, and books, to fearful patients seeking alternatives.Meanwhile, organized groups on Facebook serve as echo chambers for antistatin advocates. With the exception of a small, vocal minority, most physicians believe that statins, as with vaccines, are safe and effective.6 Their beliefs are supported by data from thousands of patients in clinical trials.7 Yet many patients remain concerned about statin safety. In 1 study, concerns about statin safety were the leading reason patients reported declining a statin, with more than 1 in 3 patients (37%) citing fears about adverse effects as their reason for not starting a statin after their physician recommended.8 Fake news about statins is making this worse._
_
....

More concerning, fears about statins may cause real problems for patients,manifesting as perceived adverse effects for adults willing to take statins. This nocebo effect was elegantly demonstrated in the GAUSS-III study in which the patients with prior statin intolerance were randomized to placebo followed by statin or statin followed by placebo. Fewer than half had recurrent adverse effects on statin but not placebo.10

....

Yet the vaccine experience has also demonstrated that a robust body of safety literature is necessary, but not sufficient, to reassure a doubting public. Behavioral science maintains that when faced with evidence contrary to a strongly held belief, people are more likely to reaffirm their convictions rather than change their mind._


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## everydayupsanddowns (Jul 2, 2019)

I think it’s quite difficult for members here to hear that statins cause absolutely no side effects whatsoever and they are imagining it all when their own experience is of quite significant problems with muscle fatigue and memory loss which resolved once they stopped taking the tablets in question.

I think there’s a great deal of difference myself between concerns over statins where things have happened - and people avoiding vaccines in case of things which *might* happen. Not least because refusing vaccines has a potential effect on other people not just on yourself, as we are currently finding with measles outbreaks.

I know you are a firm statin supporter and your own desire is to reduce your LDL cholesterol to extremely (some might even suggest unnaturally?) low levels. That is completely fine, and I wish you every success with your quest.

I think generally people on the forum have a mixed feeling, and a mixed experience of statins. Many take them  & tolerate them well, while others choose not to - and as a community I think it’s important that we respect people’s choices, while being free to explain our own thinking. At the end of the day, it is up to each of us to try to reduce our risks in the ways we see fit.

I think it would help me if the raw data of statin trials were made available for independent analysis - but sadly that doesn’t look like it will happen any time soon.


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## Northerner (Jul 2, 2019)

Personally, I think that statins can be over-prescribed, and given that there _are_ known side-effects, some of them potentially very serious, the more people who take them the higher the incidence of people experiencing those side-effects. They are pretty potent medications that interfere with quite fundamental processes, so my preference is not to take them without very good, clear reasons - which is, of course, not the case for vaccinations where the supposed 'dangers' are unproven or completely false.


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## mikeyB (Jul 2, 2019)

I used to take simvastatin but don’t any longer, for exactly the reason Northie states, but never had any ill effects. Some people do, though, which is why it’s wrong to prescribe them like sweeties. I don’t like having my metabolism manipulated.


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## Eddy Edson (Jul 2, 2019)

everydayupsanddowns said:


> I think it would help me if the raw data of statin trials were made available for independent analysis - but sadly that doesn’t look like it will happen any time soon.



From what I've seen, a lot of the angst about "raw data" concerns the numerous, large and heavily-cited studies from the Cholesterol Treatment Trialists' Collaboration (CTT), maybe munged together with older angst about the original pharma-sponsored JUPITER trial for rosuvastatin, which has been pretty much overtaken by a large array of more recent studies.  

Here is what the CTT says about its data policy:

_Individual patient data from each contributing trial have been provided to the CTT Collaboration on the understanding that they would be used only for the purpose of the CTT meta-analyses and would not be released to others. Requests for such data should be made directly to the data custodians of each trial.

CTT Collaborators and other bona fide researchers are welcome, however, to suggest analyses in writing to the Secretariat. Where proposals are thought to be feasible and of potential interest, the Secretariat will conduct such analyses or, where appropriate, seek the views of the Collaboration on whether the analyses should be performed. If so, then the proposing scientist(s) will be invited to collaborate with the Secretariat in conducting and interpreting the analyses, and will be members of the Writing Committee in any papers describing the results of analyses._

https://www.cttcollaboration.org/about2

As far as I know, there is nothing unusually secretive about this kind of data policy. 

Of course, you might be concerned about the good faith of the CTT collaborators, ie Australia's NHMRC and Oxford University, with other funding supplied by the UK MRC, the British Heart Foundation etc etc, particularly if you suspect that these bodies might be cats-paws for the Global Generic Statin Industry or something.

If, on the other hand, you tend more towards the belief that these are actually expert scientific organisation lacking a nefarious agenda, you might be willing to give weight to their key statin findings:


_Reduction of LDL cholesterol using statin therapy substantially reduces the risk of major vascular events (major coronary events, strokes or the need for coronary revascularization) and vascular mortality by about one fifth for each 1 mmol/L reduction in LDL cholesterol achieved_
_Further reductions in LDL cholesterol with more intensive statin therapy produce further reductions in the incidence of major vascular events_
_In addition, the CTT analyses have shown that statin therapy:
_

_Has no effect on the incidence of, or death from, any type of cancer_
_Is effective in a wide range of people including those with diabetes, those at low risk of vascular disease, and in both women and men_

And for safety:

_Large randomized trials, and meta-analyses of those trials, have established that statin therapy rarely results in serious muscle problems known as myopathy and rhabdomyolysis (which are characterized by muscle symptoms in association with biochemical evidence of significant muscle damage) but the absolute excess risk of such complications is very small. In addition, such studies have shown that statins cause small absolute increases in the incidence of haemorrhagic stroke and of diabetes.

However, it has been postulated that statins may have additional adverse effects. To address these concerns, the CTT Collaboration plans to extend the CTT meta-analysis dataset to encompass all recorded adverse events for each of the participating trials so as to provide a more complete understanding of the nature and magnitude of any other effects (either adverse or beneficial) of statin therapy.

...

The protocol for this project has been published: American Heart Journal 2016; 176: 63-9.

Ethics approval for the project was gained from the UK NHS Health Research Authority in March 2016.

Data sharing agreements have been finalized with the relevant parties for nearly all participating trials. A process to convert all the data into a standard universally mapped format is underway. Once this is complete, the individual participant data meta-analyses will be able to be generated.
_
https://www.cttcollaboration.org/safety-web-page/current-work


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## everydayupsanddowns (Jul 2, 2019)

Concerns over trials funded by pharmaceutical companies almost always finding favourable results is nothing new of course. This from about 10 years ago: 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2868984/

I also get a bit twitchy with the way the benefits are usually expressed. 


> _Reduction of LDL cholesterol using statin therapy substantially reduces the risk of major vascular events (major coronary events, strokes or the need for coronary revascularization) and vascular mortality by about one fifth for each 1 mmol/L reduction in LDL cholesterol achieved_



The 20% mentioned here will be relative risk reduction. To understand the benefit in terms I can understand personally (rather than population-level benefit) I find it easier to deal with NNT (number needed to treat). 

I read two comment pieces on the HOPE-3 statin trial which made me smile. One saw it conclusively demonstrated the importance of statin therapy in 'primary prevention' for people at moderate risk but without pre-existing heart disease for whom the relative risk reduction was 25%. Which the author described as 'working beautifully' and 'substantial' with only a small excess in muscle pain reported.

Another author published comment on the very same trial describing the results as 'meagre indeed'. Looked at from a different angle the same trial data shows that in order to prevent one non-fatal heart attack or stroke in the trial population, 96 people needed to be treated with statins for 5.6 years. 

By my reckoning that's over 500 years of statin taking per person to ensure each individual avoids their non-fatal heart attack/stroke.

So no. I don't think there's a massive pharma conspiracy - but I do have questions about the 'they should be put in the water supply' and 'there are absolutely no adverse events at all' narrative which can accompany some reporting.

As you've said before - heart disease is what does for most people with diabetes. And anything that reduces that risk should be very carefully considered. But each of us has an individual level of risk as well as a general 'people in your category' level of risk. And it's that which I think gives some poeple some pause for thought?


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## Northerner (Jul 2, 2019)

everydayupsanddowns said:


> Another author published comment on the very same trial describing the results as 'meagre indeed'. Looked at from a different angle the same trial data shows that in order to prevent one non-fatal heart attack or stroke in the trial population, 96 people needed to be treated with statins for 5.6 years.


That's the explanation that decided me ten years ago, that and the consultant not being able to tell me what a 'safe' lower level of cholesterol would be - after taking them for 6 months my level was 2.3 (total, don't know the breakdown and didn't even know there was one at the time ) I was also described as 'low risk' by a cardiologist at the time. Basically, I didn't need them as an individual.


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## Matt Cycle (Jul 2, 2019)

When I reached 40 my nurse mentioned them as I was in a high risk group (T1 diabetic).  I didn't see the need at the time but I'd take them if my levels were high.  They're not, so I don't.


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## Jodee (Jul 2, 2019)

Statins are useful if the patient can benefit from them that is when not taking them is a higher risk than taking them.

The doctor offered me statins when my cholesterol was only 5.5 (granted my bad cholesterol was higher than good cholesterol but I figured with the reduced carb diet and metformin the blood glucose would come back into balance and so would the balance of cholesterol.  I have my next test later in July, so we shall see.

The doctor said you are viewing it in a different way, the Nice guidelines are because of your other health issues and diabetes that you are a high risk to have a fatal heart attack or kidney failure in the next 10 years !

I am hoping my cholesterol balance will come right and that the NICE guidelines in my case will be wrong, the guidelines will no doubt change in the next 10 years as well and really you have to remember, what the doctor said to me. individuals lifestyle and diet is surely going to play a big part in that,  just gotta try and avoid stress until my expiry date comes around.


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## Drummer (Jul 2, 2019)

Taking statins with Metformin reduced me to the point where I was considering if it was worth going on living if I had to go into a care home due to my physical and mental state after only a few weeks -
wandering around unable to remember what I was supposed to be doing was dreadful.


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## trophywench (Jul 2, 2019)

I've stopped telling my story now - just say I'd never ever consider taking them again because of the side effects I had.


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## KARNAK (Jul 2, 2019)

Well @Eddy Edson I have to go with the majority, not from what I have read but from personal experience. Simvastatin, vomiting, facial muscles wouldn`t work and went white especially the top lip. Atorvastatin, vomiting, all muscles went into limp mode, including that one, I appreciate it worked a treat for you and I am pleased with what you have achieved. Because my cholesterol is above 5 but DSN couldn`t tell me LDL, HDL or Triglycerides BUT looked at past record and said no way you can go on statins.


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## Eddy Edson (Jul 3, 2019)

KARNAK said:


> Well @Eddy Edson I have to go with the majority, not from what I have read but from personal experience. Simvastatin, vomiting, facial muscles wouldn`t work and went white especially the top lip. Atorvastatin, vomiting, all muscles went into limp mode, including that one, I appreciate it worked a treat for you and I am pleased with what you have achieved. Because my cholesterol is above 5 but DSN couldn`t tell me LDL, HDL or Triglycerides BUT looked at past record and said no way you can go on statins.



Sounds horrible! I'd steer clear of them too.


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## Lisa66 (Jul 3, 2019)

I have only ever been on simvastin, some time ago now. I had incredible painful joints (not just achey, painful enough to bring me to tears at night) and worryingly fuzzy brain. As my cholesterol was ok dr and consultant were happy for me to come off them. 

Interestingly at my recent consultant appointment the subject was brought up again. It’s a few years since I stopped them. The consultant was happy with my cholesterol level, around 4 from memory, but said NICE were now recommending statins even if you had a healthy level. I mentioned my earlier problems and she said well there are plenty of others we can try you on and no rush, but to go away and give it some thought.....which I had done in the  time it took me to stand up from chair. The NICE recommendations were very much emphasised. 

I will add though that I appreciate there are many people who have absolutely no problems at all with them, this was just my experience.


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## Bruce Stephens (Jul 4, 2019)

Lisa66 said:


> I will add though that I appreciate there are many people who have absolutely no problems at all with them, this was just my experience.



My father had horrible problems with statins, too. I've had no problems on 20mg simvastatin. As you note, there are lots of others. Some people do report what sound like nasty side effects; on the other hand there's at least one good study showing strong nocebo effects. (Not that it would help much if you suspected your side effects were nocebo. I wonder how strong the placebo effect is at reducing cholesterol levels.)


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## grovesy (Jul 4, 2019)

I have tried more than one and had the pains on them . When I saw a new Doctor after my old on retired I thought she might try to get me to try gin but did not mention. I have since discovered it is recorded I as allergic,


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## Lisa66 (Jul 4, 2019)

Well I had the pains etc way before I ever read about any side effects in the media, even then I didn’t think it was connected, because the reports seem to mention general muscle aches, which I didn’t have. So went on for a long time thinking it was something else.

What interested me at my appointment was that there was a gentle push towards taking statins again, even if ones cholesterol was excellent....seemed unrelated. Consultant and gp have, up to now been happy for me not to have them...so we’ll see what’s mentioned at next time.


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## trophywench (Jul 4, 2019)

grovesy said:


> I have tried more than one and had the pains on them . When I saw a new Doctor after my old on retired I thought she might try to get me to try gin but did not mention. I have since discovered it is recorded I as allergic,



I know it was typo - but actually the right doses of gin help quite a lot of ailments !


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## trophywench (Jul 4, 2019)

I'm still bovvered about this - what the hell is the point of 'them' insisting on preventing one thing if the remedy they want to give a person for it, causes them other ailments?  Only reason I can see re myself is that if I take the things and it causes me to lose my marbles, I won't continue to complain about them every time they are suggested?

Of course I'm interested in life itself continuing - but QUALITY of life is more important at this stage in mine.


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## Bruce Stephens (Jul 4, 2019)

trophywench said:


> I'm still bovvered about this - what the hell is the point of 'them' insisting on preventing one thing if the remedy they want to give a person for it, causes them other ailments?



Yes, for someone that's had bad reactions to them it seems daft to keep offering. (If someone has a bad reaction to some antibiotic then doctors will try and avoid that antibiotic in the future, after all.)

But for a new person I can see the point: statins are (generally) cheap and effective. (Other cholesterol-lowering drugs have a more mixed history.)

And while there are reports of side effects, there are also studies suggesting nocebo effects (for example https://www.bmj.com/bmj/section-pdf/943155?path=/bmj/357/8104/This_Week.full.pdf). As mentioned, that doesn't mean patients are just imagining the side effects, or that they should keep taking the pills and accept the reactions. I suspect it's more that placebo and nocebo things are tough to deal with sensibly. (The suggestion in the article is that maybe the leaflet supplied could omit possible side effects. Very tricky in the modern world.)


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## grovesy (Jul 4, 2019)

trophywench said:


> I'm still bovvered about this - what the hell is the point of 'them' insisting on preventing one thing if the remedy they want to give a person for it, causes them other ailments?  Only reason I can see re myself is that if I take the things and it causes me to lose my marbles, I won't continue to complain about them every time they are suggested?
> 
> Of course I'm interested in life itself continuing - but QUALITY of life is more important at this stage in mine.


Agree with those sentiments.


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## everydayupsanddowns (Jul 5, 2019)

trophywench said:


> I'm still bovvered about this - what the hell is the point of 'them' insisting on preventing one thing if the remedy they want to give a person for it, causes them other ailments?



Well I guess it’s because the trial data shows that for the vast majority of people there will be no problems at all. And that some of the people who struggle with them might be fine with a different type. Or in some cases if they think they are taking something that won’t cause them problems. 

These are the best medicines that exist, in order to the trial data, to reduce the risk of heart attacks and stroke. But it’s a relative reduction in risk, and risk means that something might happen, or it might not. So there are no guarantees either way. If you look at it from one direction the vast majority of people taking statins get absolutely no benefit at all. But from another direction each and every person taking statin significantly reduces their risk of a heart attack or stroke, and you would be mad not to ESPECIALLY if you are in one of the groups that puts you at a higher risk eg Diabetes. 

So at the end of the day it just depends on what you think. And how you choose to interpret the numbers.


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