Statins

[ChrisColumbus]

Apologies, this is a very long post!

Statins are known by members of this forum to trigger/exacerbate RLS, although the NHS doesn’t formally recognise this.

Statins are the most prescribed drug in the world, recommended for the reduction of cholesterol. Many doctors will say that they are essential, that there are no alternatives, and benefits outweigh all side effects. But some of this is debatable.

Kaarina reminded us a few days ago that people shouldn’t just drop prescribed medications because they had an adverse effect on their RLS without discussing this with their doctor: this was particularly mentioned with reference to beta blockers and statins, but was of course good general advice.

I feel that it might be useful to have a post about statins, as when I had problems with these in 2021 (i) I was ignorant of the potential side effects (which weren’t discussed with me at the time of prescription), and (ii) I had some difficulty getting a consultant to listen to my side effects and to agree to take action – a fact that I’ve mentioned in Replies in the past. I just thought that I’d elaborate in case it might help anyone else.

There are some (minority) diverging views within medical and scientific communities as to whether statins are over-prescribed and on how serious the side effects are, which I will mention again at the end of this piece. But firstly some general points about statins, in case anyone doesn’t know, and the various brand names that are used:

“Statins are a group of medicines that can help lower the level of low-density lipoprotein (LDL) cholesterol in the blood….. Having a high level of LDL cholesterol is potentially dangerous, as it can lead to a hardening and narrowing of the arteries (atherosclerosis) and cardiovascular disease (CVD).” nhs.uk/conditions/statins/

They were developed from research into fungi: americanscientist.org/artic...

“Statins slow down LDL-cholesterol production by blocking an enzyme called HMG-CoA-Reductase.”

Common statins include atorvastatin (brand name: Lipitor and many others); rosuvastatin (Crestor, Ezallor Sprinkle); simvastatin (Zocor, Simvador); fluvastatin (Lescol, Canef, Vastin); lovastatin (Mevacor, Advicor, Altocor, Altoprev); pitavastatin (Livazo, Livalo, Zypitamag); pravastatin (Pravachol and others). In the UK mostly the generic names are used, while in the US 80% of prescriptions are in the brand names.

Statins are the most widely prescribed drugs in the world: guidelines for their prescription vary, but it has been reported that over 7 million Britons and around 40 million Americans have been prescribed statins. I recently read that c. 50% of American men over 60 were prescribed statins.

“You usually have to continue taking statins for life because if you stop taking them, your cholesterol will return to a high level.” NHS advice

“Many people who take statins experience no or very few side effects. Others experience some side effects, but these are usually minor, such as diarrhoea, a headache or feeling sick. Your doctor should discuss the risks and benefits of taking statins if they're offered to you. The risks of any side effects also have to be balanced against the benefits of preventing serious problems.” NHS advice

Statins are known by members of this forum to trigger/exacerbate RLS, although the NHS doesn’t formally recognise this.

According to the NHS, side effects can vary between different statins but common side effects include: headache, dizziness, feeling sick, feeling unusually tired or physically weak, digestive system problems, such as constipation, diarrhoea, indigestion or farting, muscle pain, sleep problems, low blood platelet count.

Uncommon side effects of statins include: being sick, memory problems, hair loss, pins and needles, inflammation of the liver (hepatitis), inflammation of the pancreas (pancreatitis), skin problems, such as acne or an itchy red rash, sexual problems such as loss of libido (reduced sex drive) or erectile dysfunction.

Rare side effects of statins include: muscle weakness (myopathy), loss of sensation or tingling in the nerve endings of the hands and feet (peripheral neuropathy), tendon problems.

I first heard about statins and some of the problems with them around 10 years ago from a work colleague. He had been put on statins, had a terrible experience with them, and then couldn’t get his medical team to prescribe anything else instead. It was statins or nothing. He eventually took himself off them (yes, admittedly a risky decision), changed his lifestyle and took more exercise, changed to a largely vegetarian and then a totally vegan diet, and in effect cured himself: 10 years later and he still has no health problems.

Nearly two years ago I had a Transient Ischaemic Attack (TIA, ‘mini-stroke’) and was referred to the UKs leading research centre into stroke and dementia, where atorvastatin was prescribed to lower LDL cholesterol (which wasn’t particularly high, but the statin prescription was described as ‘precautionary’). I was unhappy about the use of statins in the light of my ex-colleague’s experience, but was told that statins were the only possible treatment.

I then went through 6 months of bad nightly RLS symptoms – something that I’d previously largely got under control through using magnesium citrate – but even worse a long period of feeling unusually tired and physically weak, muscle pains, and digestive system problems including diarrhoea. I cannot stress enough how low these side effects made me feel.

It was only on this forum 18 months ago that I learned that the RLS resurgence at least was likely to be caused by the atorvastatin, and that I should get myself off them. I went back to the consultant who denied that there was any connection with RLS, which she clearly anyway only considered a mild inconvenience, and she wanted me to stay on statins. She didn’t explain that the feeling tired and weak etc could also be linked to the statin.

It was only when I threatened to take myself off the statin that she eventually agreed to put me on ezetimibe (brand names Ezetrol, Zetia) instead. I later found that ezetimibe, which works differently from statins in that it inhibits the intestinal absorption of cholesterol, is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL.

“Like all medicines, ezetimibe can cause side effects in some people, although not everyone gets them. Common side effects (affecting more than 1 in 100) include stomach (abdominal) pain, diarrhoea, farting more than usual, feeling more tired than usual

Serious side effects (affecting less than 1 in 10,000) include muscle pain, tenderness, weakness or cramps, yellow skin or the whites of your eyes turn yellow, pale poo and dark pee – this can be a sign of liver problems. severe stomach pain (just under your ribs) – this can be a symptom of pancreas problems.” NHS advice.

There have also been reports that ezetimibe triggers/exacerbates RLS, but it doesn’t for me. And it certainly doesn’t cause the tiredness and weakness that the statins did (my GP got me to try rosuvastatin for a while, but this had similar if less extensive side effects as the atorvastatin).

It’s possible that the reports linking ezetimibe to RLS may be partly due to the fact that ezetimibe may – particularly in the US - be supplied in combination with other drugs including statins: ezetimibe and simvastatin (Inegy, Vytorin); ezetimibe and atorvastatin (Liptruzet, Atozet); ezetimibe and rosuvastatin (Ridutrin); ezetimibe and bempedoic acid (Nustendi, Nexlizet). Or, of course, it may affect some because “we’re all different”.

Ezetimibe may be a better prescription than a statin for some people, and I have certainly found it so.

UPDATE 26/01/23

Other alternatives to statins include bempedoic acid which works by reducing the production of cholesterol in the liver. Common or very common side effects: anaemia; gout; hyperuricaemia; pain in extremity. Frequency not known: Diarrhoea; muscle spasms; nausea

And Nustendi (Nexlizet in the US) which combines ezetimibe with bempedoic acid. This may be a good alternative for people who cannot tolerate statins, but it too has a long list of possible side effects.

medicines.org.uk/emc/produc...

UPDATE 12/2/23

Another possibility with no adverse RLS reports is fenofibrate (Lipantil,Supralip; Triglide in the US)

Unfortunately, rather like ezetimibe, common or very common side effects of fenofibrate include abdominal pain, diarrhoea, flatulence, nausea, vomiting...

bnf.nice.org.uk/drugs/fenof...

However, statins may remain necessary for some.

“The NHS, NICE, other guideline bodies in the UK, the British Heart Foundation and many organisations strongly support the use of statins to reduce the risk of cardiovascular events such as myocardial infarction (MI) and stroke. But the nature of how the drugs are used – as a preventive treatment prescribed at scale – can court controversy in the media.” BHF advice.

The controversy over prescription of statins in the UK hit the headlines in 2013 when the British Medical Journal (BMJ) claimed statins were being overprescribed to people with low risk of heart disease, and that the side effects were worse than previously thought. The debate has continued since then, with vigorous rebuttals in The Lancet and elsewhere, but also a measure of agreement in some medical and scientific circles. The majority feeling within the medical profession currently remains that the use of statins should be expanded rather than reduced, and that the benefits outweigh the side effects.

I would guess that this may partly be because not enough sufferers go back to their doctors to complain about their side effects. If you have no side effects that you can link to a statin, great. But if you do, please talk to your doctor – my consultant grudgingly agreed that I could come off, and my GP accepts (now that I’ve tried two statins) that in my case the side effects of statins do outweigh the benefits when an alternative is available.

In fact, cholesterol may in some circumstances be better reduced by modifying diet: some have had success by moving to a vegan diet. I don't (currently) have the willpower for this!

[Hidden]

Good evening, ChrisColumbus, and Happy New Year!

Some years ago, another of our so-called experts (this time, an "expert" in internal medicine) prescribed statins for me to control my high cholesterol. A charitable person might excuse the fact that this doctor prescribed statins for someone such as I who was suffering with RLS (I sought his counsel per the suggestion of a "sleep-expert" neurologist, at the very same medical facility, who supposedly was treating me for RLS).

But my gosh! My father and brother both had diabestes (father type 2; brother type 1). Having himself declared that I then was "pre-diabetic" (whatever the hell that means), he nonetheless prescribed statins. Later research by me confirmed that statins are counter-indicated in persons with diabetes. Moreover, others counseled me (which I later confirmed with my own research) that, once a person begins statins, they must take statins for the remainder of their lives lest their cholesterol rise to ever increasing heights following their discontinuance. A foreshadowing of DAWS.

I tossed the unused vial of statins in the trash can. No regrets.

As to the length of your post: I am a neophyte [here], and not an Administrator. But my understanding is that only the Subjects are limited in size. I enjoy reading your comments and your replies to others' comments (including my own). My own comments and replies tend to be lengthy in any event, so you "take some heat" off of mine in that regard.

Be well.

[SleeplessinOR]

Your post is very timely for me. I have taken myself off the second statin prescribed due to side effects; significantly increased RLS, weakness in my legs, generally feeling fatigued all the time. I have an appointment with my doctor this coming week and plan too tell her she needs to think of something else because I’m not tolerating the statins well. My cholesterol is not very high, just barely above the line between acceptable and high. I’ll ask about the medication you mentioned. Thank you for your post,

[Zyxx in reply to SleeplessinOR]

Omg don’t even think of taking them if your cholesterol level is barely above the (ever changing) number they use to decide treatment….

At that “risk” level your statin is highly unlikely to do anything beneficial.

If you are a woman there is even less evidence that statins will do you any good. Don’t allow yourself to get worried because of a small rise in cholesterol…

[SleeplessinOR in reply to Zyxx]

Thank you. Yes, I am a woman, 67 years old with low blood pressure and a normal BMI. When I’ve plugged my numbers into one of the on line risk calculators it says my risk for a heart event in the next 10 years is low. They’ve been trying to get me to take a statin for the last 2 years and I resisted but finally gave in and tried a couple of them for very short period of time, no more than a month. I’m going to take your advice and follow my own gut instinct which says not to take them at all as I don’t really believe I need them. You are so right, the numbers they use to determine who needs treatment changes all the time.

[Zyxx in reply to SleeplessinOR]

I’m so glad you’re ditching them. At your risk level, if I quickly apply the Cochrane figures I just read, there would be a (less than, since you’re hardly even low risk) 1 in 167 chance that the statin would be beneficial. So you and 166 others would just be taking it because 1 other person might benefit if taking it for 5 years.

Nuts, isn’t it.

[Wairahi]

Thanks for this. Very helpful.

[Johan10 in reply to Wairahi]

Thanks Chris for such an informative post. Very useful insight to help make a balanced decision as to whether to discuss changing from statins with GP.

[Wairahi in reply to Johan10]

Hi Johan, looks like you replied to me instead of Chris by mistake. Cheers.

[ChrisColumbus in reply to Wairahi]

I saw anyway, but thanks. I'm just glad if a few people find it interesting/useful

[DicCarlson]

I thought I would weigh-in on the Statins. Of course the docs are "you better take this or you will fall over dead - soon!" I tried 3 different ones, horrible muscle aches, cramps and exercise intolerance. I switched my diet around (realize that 4 billion people do not have heart disease because they eat plant based). And I added these supplements Pantethine, Nattokinase, and Cirtus Bergamot. Most metrics returned to normal within 3 months. I'm due for blood work mid January and will keep you posted. Neither the Statins (I was barely on them for 2 weeks) or the above supplements increased or decreased my RLS or sleep issues.

[ChrisColumbus in reply to DicCarlson]

Agreed that a plant based/ vegan diet is really the way to go to combat high cholesterol etc - my ex colleague and SueJohnson 's husband both did the same. I have made some steps that way - we grow a lot of vegetables on our allotments - but I need to go further.

[SueJohnson in reply to DicCarlson]

As ChrisColumbus mentioned my husband lowered his cholesterol from 221 to 131 by going on a vegan diet. Quite dramatic.

[PoorRichard]

I also suggest all to read the book cited by Eryl "A Statin-free Life". It literally changed my life. Besides statin-free, it addresses other health issues. Please read it!

[restlessstoz]

An interesting post Chris, and I will try to contain the word count but suspect I will add to the 'long post' phenomenon as well. I was on statins for years until a chance encounter in Accident and Emergency with a doctor who thought to check for levels of certain enzymes in my blood.

I had suffered, what was later diagnosed as a ruptured disc and it caused me to lose all feeling in my left leg. This is what brought me to A & E. The doctor saw I was on statins and did a precautionary blood test to check for enzymes related to muscle breakdown.

I was horrified when a doctor ran to me with a bag of saline and said we have to put this in ASAP and the doctor will come and discuss.

The doctor did come and explained that the blood test has shown dangerously high levels of the enzymes which indicated that due the the statins, my muscles had been breaking down- hence the aching legs etc. and I was in danger of severe kidney damage. I had already identified the pain in my legs as due to statins, and changed to one which was supposedly not supposed to cause the same effect. Unfortunately in rare cases, it still does cause the same problem. I was told to never touch any statins or equivalent again and after two litres of saline... and eventually the diagnosis that my numb legs was due to the ruptured disc (and not a stroke as was suspected); and I was discharged.

I still have high cholesterol despite barely any animal fats and a largely vegetarian diet and as active a lifestyle as my body will allow; but the risks of starting on any drugs similar to the statins has more risks than the satins themselves. My doctor is waiting until a new type of drug is discovered which won't have the same risks. My family have equally high cholesterol levels and yet lived equally long lives, (my dad is now 94, his mum 98 when she died)and I hope that the scary stories aren't necessarily true for all high cholesterol 'sufferers'.

I understand that my case was very rare and don't wish to scare people into dropping a medication that has been prescribed. However, I had no idea that this could happen or at the time that the other unpleasant side effects such as aching muscles could be very dangerous . It emphasises that one should never take a medication without a full understanding of the symptoms and side effects to look out for that could be life threatening. Had I not had a ruptured disc with scary symptoms resulting in admission to A&E; and had a meticulous doctor; I could have suffered irreversible kidney damage.

[Zyxx in reply to restlessstoz]

I don’t think your case is very rare. In any case - as I wrote to Chris, the chance that your statin would lower your risk of heart attack is much smaller than the chance that it would do nothing beneficial at all. So I’d say you don’t need to worry about not taking them - it’s not a drug that works a little for everyone. It works for a few and not at all for the rest.

Furthermore, cholesterol is, like all biochemistry/physiology extremely complicated. The idea that we know most of what we need to know about it is nuts. Many researchers believe that cholesterol is a marker but not a cause for cardiovascular trouble, and some believe it’s not even a marker, either.

In any case, your parents did fine with high cholesterol levels. Why worry? Why be medicated when you are not ill? This treating of numbers instead of actual disease is controversial.

Enjoy yourself and forget about those silly pills.

[Zyxx]

Chris, haven’t read all of your post since I’m about to leave the house, but a few points - there’s not a small but by now a huge controversy about statins. Probably not among most ordinary doctors, who will follow what the pharmaceutical company says.

It is very probably untrue that only few people have side effects. Don’t count on it.

Further, statins work on a NNT basis, which means that a majority of people who take them have no benefits at all. What is the nnt for statins? Well, of course you can find many different answers to that in the literature.

Have no time to go deeply into it, but results from a Cochrane review should be pretty much the most reliable you can get.

I find this, for instance:

ResultsPersistence-adjusted 5-year NNTs to prevent one CHD for the lower and higher CHD risk categories were 146 [95% confidence interval (CI): 117–211] and 53 (95% CI: 39–88) respectively, values 25% and 15% higher than their unadjusted counterpart (117, 95% CI: 94–167 and 46, 95% CI: 34–78).

So it depends on how high your risk is to determine the NTT.

Personally, I wouldn’t touch them and instead do something about real prevention.

[ChrisColumbus in reply to Zyxx]

Frankly I wouldn't touch them now either unless my situation were to change markedly.

I'm not sure where you are, but in the UK it seems to me that - despite the questions initiated by the BMJ and others - most of the medical establishment remains firmly in favour of statins. This is exemplified by The Wolfson Centre for the Prevention of Stroke and Dementia "the UK’s first purpose-built research centre focussed specifically on prevention of cerebrovascular disease", which has run the Oxford Vascular Study for over 20 years, and is seemingly still very much in favour of statins.

I understand and accept this Forum's reminder that members should talk to their doctors first about proposed changes to their treatment made by other members. Conversely I think that it's essential that people should be aware of the side effects from statins, that if they are suffering they must challenge their doctor, and indeed challenge the insistence that they *must* go on statins in the first place.

[Zyxx in reply to ChrisColumbus]

Yes. Doctors don’t commonly explain the NNT thing to patients, and for instance my friend’s doctor quite incorrectly said he would die if he didn’t take statins. Absolute tosh.

Furthermore, my friend had bad side effects - severe pains in his arms and legs. I’ve talked to a lot of people who take or took statins, and the great majority of them complain of side effects, varying from mild to severe.

My friend’s doctor said it probably wasn’t because of the statins. Thankfully, my friend disregarded that and stopped the statins anyway.

Some years later his doctor said: “We’ve had a regional conference with colleagues. And we’ve decided that, since we’ve had so many reports from patients about side effects, that we’re going to believe the patients instead of the industry which says side effects are extremely rare.”

Took them years to start taking the patients seriously!

One zero occasions when I have reported side effects (for different medications) to doctors have they written them down for the side effect database (VAERS in the US, I believe; I am in the Netherlands.) And that seems to be almost invariably the experience of friends, too. Rather, we are told: no, that is not a side effect of medication X.

So how can the side effect reporting system possibly work?

In fact, doctors are often instructed to tell patients something could not be a side effect of med X because otherwise it will be a self fulfilling prophecy and patients will imagine having side effects through the nocebo mechanism.

There’s a lot of sheer quackery in medicine.

[SimpleSimon2]

Well, what a great post. In summary, you could have been describing me. I had a heart attack in 2015, and had 2 stents and put on statins plus all the other usual drugs, and had awful nausea, stomach each, chest pain etc. plus they really wound up my RLS. So I too was put on ezitemebe but that made my RLS even worse. So I took myself off the statins\ezitemebe. Over about 18 months my total cholesterol went from 3.9 to 5.5 so I’ve reluctantly gone back on a low dose statin, and lo and behold my RLS has come back with a vengeance. Tbh, I’d rather come off them and live a shorter life of happiness, than live a longer life of RLS, little sleep and general depression because my legs just ache/hurt/need to be moved etc. of on;y someone could “cure” RLS!!