I have just discovered a fascinating paper which describes the results of gathering and collating information from self-reported accounts of adverse reactions to statins (1). It has been published on the internet by the Journal of Independent Medical Researchers, which enables individuals to present their thoughts and ideas. All those involved give their time free so that no money changes hands.
The experience of patients
The report is based on information contained in self-reported accounts from patients who had signed an e-petition which will be sent to the World Health Organisation (WHO). About half of them were from the USA and most of the remainder were from Europe. In total 888 people had signed the petition. Of these, reports from 351 were considered to provide useful information.
All of these had experienced adverse reactions to treatments with statins. Of these, 61% stated that they had stopped taking the statins because they were unable to cope with the severity of the side effects. Sixty three patients reported they had sustained permanent damage and 120 continued to experience adverse reactions which were still not resolved. Eighteen patients were suffering from amyotrophic lateral sclerosis (ALS)/motor neurone disease, with one case of ALS being diagnosed within six weeks of starting statin therapy. There were 29 cases of major neurodegenerative disorders including Parkinson?s disease, Alzheimer?s disease (AD), multiple system atrophy, progressive supra-nuclear polyneuropathy, chronic inflammatory demyelinating polyneuropathy and ALS/motor neurone disease. Sixty nine patients experienced memory loss and 18 patients complained of cognitive impairment, and 6 experienced transient global amnesia.
The clinicians’ perspective
The comments from the patients reveal some valuable insight into the attitudes and approaches by the clinicians. Here are some examples:
- Patients who experience difficulties while taking their prescribed statin medication find that it is not easy to persuade their treating clinicians that it is the statins which are responsible for causing their adverse reaction symptoms.
- It was found that there were 82 clinicians who did not associate their patients’ symptoms with an adverse reaction to statin therapy.
- There were actually a number who would not accept that statins could be the cause of the adverse reactions.
- Several of the respondents had described how statins had been prescribed without any clinical consultation. When the results of routine analysis of blood samples became available, clinicians instructed the practice receptionist to ask the patient to call for the prescription. This means there was no opportunity to provide the relevant advice or explain about the potential adverse side effects. If this description of events is accurate then it means that no consent to the treatment would have been given.
The report notes that it is a particularly worrying time for a patient when an adverse reaction is experienced. The person is likely to have fears about damages to his/her health and even premature mortality. If these concerns are met by ridicule on the part of the clinician, then it is likely that the patient will begin to have serious doubts about the competence of the clinician, not only with respect to statins but more generally.
When complaints were made about adverse side effects it was revealed that the response was to prescribe some different statins in addition, which provoked the comment:
“The prescribing of two or three different agents, on the back of complaints about unwanted effects that were caused by the initial prescription, betrays a lack of knowledge about the action of statins. The prescribing of six different agents under precisely the same circumstances displays an unexpected indifference to the healthcare needs of patients.”
This study also shows that there was a very high incidence of major degenerative diseases. To find 18 cases of ALS from 351 reports is extremely worrying and about 10,000 times greater than would have been expected, based on the accepted norms.
It is established that treatment with statins lower cholesterol by inhibiting the mevalonate metabolic pathway (MMP) which also means that the synthesis of Ubiquinone (Coenzyme Q10) is also inhibited. Ubiquinone plays a vital role in the body and if the level is reduced it is likely to cause myopathy, which is one of the established side effects of statin therapy. In the light of this, it would be expected that anyone prescribed statins would automatically also be prescribed with ubiquinone. But the reality is that this just happen regularly.
Other important biochemicals which are synthesised in the MMP are Heme A and dolichols.
A reduction in Heme A interferes with the efficient functioning of the mitochondria, which are the “powerhouses” of the cells. Reductions in Heme A may also cause damage to the nerves and to DNA. Any reduction in Heme A may lead to the accelerated decay of mitochondria. . The inhibition of the MMP also has implications for the production of other substances which have a critical role in the body.
Dolichols are required for cell identification, cell communication and immune system functionality.
Memory loss was reported in almost 20% of the respondents. Unfortunately many doctors do not take this seriously and often just shrug it off as an inevitable consequence of the aging process. Nevertheless it has finally been recognised as likely side effect.
Just under 10% reported that they had suffered from depression and this is quite consistent with research which shows that this is one of the consequences which can arise with low levels of blood cholesterol.
Over half of the respondents had not been able to resolve the statin-induced side effects, while just less than one fifth claimed that the damage was permanent.
CONCLUSION
No doubt there will be those who dismiss this study on the grounds that it is based on individuals who have prepared their own reports and that they cannot be validated and may be biased. Even allowing for some inaccuracies, the information here provides valuable insight into what is happening in the real world. There is plenty of evidence to demonstrate that the reporting of adverse side effects to drugs is minimal. This report confirms that many clinicians are not interested and may even be in denial when it comes to identifying these reactions. The rather widespread failure to recognise the impact of statins on the normal and essential metabolic pathways is unbelievable.
Many people who are being prescribed statins would be shocked to learn about the information in this report. NICE accepts that 77 people have to be on statins for 3 years for one person to benefit (2), which according to Malcolm Kendrick is an extra 6 months of life (3). This only applies to those who have had previous heart disease. For others the benefits are even less but the side effects are the same are the same. How many patients would agree to statins if they were made aware of this information at the outset?
REFERENCES
This report makes me very glad I stopped taking statins!
I got extreme cramps in my leg (previously weakened by childhood polio), and because the problem only happened after taking Simvastatin for 3 years, and was confined to that leg, neither I nor my doctor realised at first that it was caused by the statin. Fortunately we agreed that it might be best to stop the statin in case it aggravated my condition. After starting and stopping the statin 3 times, it became obvious what was causing the problem, which gradually cleared up over about 9 months after I stopped.
What really struck me was that after I discovered the cause of my problem, simply talking with friends and acquaintances, produced an amazing number of statin stories. Most were muscle related (but without the polio complication) and one man had both muscle and memory problems (sufficient to cause him to almost lose his business). All these problems had vanished once they stopped taking the statin.
I consider statins to be very dangerous because:
a) The side effects clearly don’t always start in the first few weeks, and can easily be confused with something else.
b) My case suggests that statin side effects may start in a part of the body that is already weak. This increases the danger that the whole problem is misdiagnosed.
It is worth noting that the muscle side effects are vastly downplayed – mere “muscle pains”. At its worst, I was getting horrible cramps in my leg and I feared I might lose the ability to walk at all. I am also pretty sure the side effects were still increasing at the time I stopped taking the tablets.
Fortunately in my case, none of this was permanent, and I can hike and cycle just as well as I did before, but I do know from internet reports (confirmed by your account) that this isn’t always the case.
People with mobility problems and memory problems often end up in care homes, where they are fed their statins for the rest of their lives – which is a dreadful thought.
Hello David,
It is just horrendous what is happening. You might like this by Tim Noakes
http://www.thenoakesfoundation.org/2015/profs-words-my-medical-epiphany
V
Have sent email. Absolutely no justification for prescribing statins for women. At 60+ those with highest cholesterol have the greatest life expectancy.
V
Message from the U.S.:
Imagine if the disturbing study about adverse side effects had been written by a marketing firm. It might have turned out something like Statin USAGE.
The key message of Statin USAGE (USAGE stands for “Understanding Statin use in America and Gaps in Education”) seems to be that too many people have quit taking statins due to side effects and that these folks need to be talked back into taking them. Really.
Claiming to be the Largest Known Cholesterol Survey Conducted in the United States, the Statin USAGE survey involved more than 10,000 participants, most of them older white women, who said that side effects were the leading reason why they stopped taking statins.
The survey, supported by Kowa Pharmaceuticals America, Inc. and the National Lipid Association, seems to view this as a messaging challenge: What must a doctor say to get folks to see the benefits of taking a drug that they have already given up on? (Kowa is the company behind the statin Livalo and the fenfibrate Lipofen, which suggests it has a financial interest in the success of controlling cholesterol with drugs.)
The Statin USAGE site includes all sorts of discussion guides and slide shows to help steer patients in the “healthy” direction of a daily medication. One can almost feel sympathy for marketers facing such a daunting task. Just consider how quickly the USAGE Survey indicates folks quit taking their statins: 25% of patients discontinue their statin after a single month, 50% discontinue within three months, and as many as 75% discontinue in the first year. Ouch.
On the other hand, it’s probably important to finally have some solid information on just how noxious most folks find this class of drugs.
Many thanks for this. I have had a look at the website which is at
http://www.statinusage.com/Pages/index.aspx
Unfortunately it is pushing the old discredited story. It really is scandalous that people are being warned to lower their Total Cholesterol(TC) as well as the LDL. There is now loads of evidence to show that from about 60 years old (when most deaths occur)
A) There are higher death rates with low TC and LDL
B) High values do not mean high death rates and in women, the higher the TC and LDL, the greater expectancy.
Details here
https://vernerwheelock.com/?p=105
Similar results have been obtained in Japan
https://www.karger.com/Article/Pdf/381654
There is no way I will be taking statins. It makes much sense to have a healthy diet based on Low Carb/High Health Fats and take some exercise.
V
While sceptici might think that self reported accounts of patients might not give a good/complete/true picture, one has to take into account that there also might be quite some reports of those suffering from statins which at the moment of signing the petition and commenting on it, did not know yet the full spectrum of their damage by the statin. At least, this holds for me – then, just stopped with the statin – I had no idea I suffered of anything else than muscle damage – the even worse parts of damage like cognitive and organ damage, I had no idea about yet really and then I could not say yet that most of the damage is irreversiible – what I unfortunately can say 4 years later. So, there might be quite some underestimations patients gave b/c of simply not knowing by then.
Very sound points. Benefits are so minimal that there is no way I would ever be persuaded to be treated with statins.
V
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Excellent news. Thank you for sharing with us.
V