statins and RLS

[Stelladevico]

My doctor wants me to take statins but I am so afraid they will trigger RLS as mine are fairly well controlled at the moment. I think I read on here that there are alternatives to statins, but I have not been able to find any names. Can anyone help?

[SueJohnson]

Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.If you take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL

[Stelladevico in reply to SueJohnson]

Hi Sue and thank you for your reply which Is really helpful as my doctor is open to discussing alternatives to statins.

I do take gabapentin so I have looked around for any information about its influence on cholesterol to show the doctor, but can’t find anything in the UK.

[SueJohnson in reply to Stelladevico]

researchgate.net/publicatio...

pubmed.ncbi.nlm.nih.gov/258...

[ChrisColumbus]

Not everyone suffers bad side effects from statins, although much of the medical profession tends to say that the benefits outweigh the side effects anyway. I recommend reading Justin Smith's 'Statin Nation'.

I had a terrible time on atorvastatin and to a lesser extent on rosuvastatin: not just terrible RLS but muscle and joint pains and awful tiredness. The worst time of my life.

Of course, ALL drugs including alternatives to statins have side effects for many.

It was only when I threatened to take myself off the statin that my consultant 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.

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.

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....

Ezetimibe may be a better prescription than a statin for some people, and I have certainly found it so. I did eventually - with my doctor and consultants agreement - come off eze too because it disagreed with my post-radiotherapy proctitis of the bowel.

Other alternatives to statins include bempedoic acid which works by reducing the production of cholesterol in the liver.

And Nustendi (Nexlizet in the US) which combines ezetimibe with bempedoic acid. This may be a good alternative for people who cannot tolerate statins

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

Discuss with your doctor, and ask that - whatever you agree to - you have a schedule in place to monitor progress and side effects. Some doctors will put you on statins for life without consideration: thankfully it sounds as if you may have a good one.

Good luck!

[Eryl in reply to ChrisColumbus]

The trouble is that there are fwo types of LDL, one good and one bad but statins lower both, the way to reduce the bad one without reducing the good one is through diet, avoiding refined sugar and other processed foods.

[SueJohnson in reply to Eryl]

They are both bad.

[Eryl in reply to SueJohnson]

Watch Robert Lustig's video below and you might learn something.

[Stelladevico in reply to ChrisColumbus]

Thanks so much for your very detailed reply which I am taking to my next GP appointment.

[ChrisColumbus in reply to Stelladevico]

You may not suffer a bad reaction from statins, it's not universal. Whether you *need* to be on statins or any other medication is a matter to discuss with your doctor: they are most likely to say 'yes, you need to take drugs to control cholesterol'.

I've got to have the conversation again with a new doctor in 2 weeks time...

[Nikos64]

I have been taking statins for nearly 30y. I also have a fairly severe case of RLS. I’ve taken atorvastatin, pravastatin and now rosuvastatin which is a high intensity statin. I’ve never had any issues with these medications especially not with RLS. These are safe medications in my humble opinion and they may save your life from a heart attack or stroke.

[ChrisColumbus in reply to Nikos64]

Its true that only some suffer severe side effects from statins, but some of us do: terrible tiredness, aches in joints and muscles...

And only some experience statins triggering RLS, but again some of us do: in my case the link was very clear - no RLS-take statins-terrible RLS-stop statins-no RLS and no need to take any meds for RLS.

I'm interested that you have fairly severe RLS and need to take drugs for it, but do not associate it with being on statins for nearly 30 years. So what do you understand causes your RLS?

[Nikos64 in reply to ChrisColumbus]

I do not understand the causes of my RLS exactly. However, I’ve had it since childhood and probably got it thru my mother who also has it. So, there’s a strong genetic component to RLS.

As for statins, I really agree with you because people react differently to medications. Currently I’m on Mounjaro for metabolic disorder and it is triggering RLS with me. So, I’m not surprised to hear statins trigger RLS for you, it’s just uncommon I think.

[ChrisColumbus in reply to Nikos64]

I'd had RLS from childhood too, also from my mother.

Taking iron never helped me. It was only in recent years that I found that taking magnesium citrate daily started to bring it under control, but then went on atorvastatin and I got bad side effects and RLS went crazy! My doctor also tried me on rosuvastatin: not as bad as atorvastatin, but still made RLS worse.

Since coming off statins, continuing with magnesium, and making some changes to diet I only very rarely have RLS. And I don't take any meds for RLS.

And it was on this forum that I was first told that atorvastatin commonly triggers RLS - I think it was Manerva / Elffindoe that told me...

Shame that tirzepatide/Mounjaro triggers you: I've not noticed that mentioned here before, but several people on a Reddit forum said the same. One of them said that they were switching back to dulaglutide (Trulicity) instead, but that may or may not be appropriate for your condition...

Good luck!

[Nikos64 in reply to ChrisColumbus]

Every time I inject myself with Mounjaro, for the next 2-3 nights I have RLS… then it improves until the next injection. But I think my brain is getting used to it because the severity of the RLS is improving.

Moujaro has dramatically improved my metabolic health. Not only have I lost weight, but my blood tests are outstanding. I went from being prediabetic to normal and I stopped taking high doses of strong anti blood pressure medications.

So I had to make a judgement call. Do I give up the multiple health benefits of a drug that is improving my health and suffer RLS for a few days a month or the opposite? I opted for the Mounjaro because I think it is the safest of both roads.

I could’ve asked for a higher dose of oxycodone or gabapentin. But I didn’t want to go down that road either.

So, here’s a few ideas for you:

Why not try going on the rosuvastatin for a while and see whether your brain adapts to it and your RLS improves.

Have you tried a low carb diet ? Carbs generally increase blood cholesterol, raise LDLs and increase triglycerides. But in all honesty, this diet has not been good for my RLS.

Finally, could you consider ozempic for improving your lipid panels?

I’m not a doctor … but those are the things I would ask my doctor(s) about

[Nikos64 in reply to Nikos64]

Forgot to mention… lately I’ve been trying a plant based diet based on the advice of my sleep specialist. The proponents of this diet claim it will save many lives if more people adopt it. They also claim that this diet eliminates the need for statins

My sleep specialist has published a peer reviewed paper which proves that this diet improves obstructive sleep apnea (which I have) and in turn improves RLS which is related to sleep apnea

[ChrisColumbus in reply to Nikos64]

Thanks Nikos: I tried rosuvastatin - it's certainly less 'bad' for me than atorvastatin, but still problematic. My lipid levels are only marginally raised and there's no medical need for semaglutide (Ozempic). A plant-based diet would indeed be the best move: it worked for SueJohnson's husband.

[Tryffan1]

I still take Atorvastatin but make sure that I take it early morning.

[Allyp69]

I tried plant sterols etc..didn't work..so reluctantly took statins...fortunately haven't affected my RLS at all. My GP said that my high cholesterol was not affected y diet etc...

[Eryl]

Cholesterol is essential to the working of the body, it's how essential fatty acids are carried in the aqueous bloodstream. The idea that statins will lower your risk of having a heart attack or stroke is much overhyped as this video shows. p.s. statins do not exacerbate rls but the things that cause rls also damage your cholesterol. youtu.be/C3rsNCFNAw8?si=PPm...(Not working as expected?)

[JenniferBut in reply to Eryl]

Totally agree. I won't take them or be tested. Most folks who have stroke, heart attack are on statins.

[Eryl]

Or this one: youtu.be/08gQrUAZSaE?si=SLz...(Not working as expected?)

[JenniferBut]

Hi 👋They revved my legs up. I stopped. I have decided to focus on lifestyle and ignore gp pressure to go on statins. Lots of reading online regarding this topic.

Co q 10 is an option.

Good luck