Statin Intolerance: What did you do?

Posted by tim1028 @tim1028, Jun 4, 2019

I've developed statin intolerance over the 6 months I've been taking daily 40 mg atorvastatin. I'd like to hear from those of you who also have statin intolerance about what your next steps were. Did you lower the dose of the same statin? Switch to another statin? Stop statins altogether? Other approaches?

In my case, I developed muscle weakness, energy loss, shortness of breath and noticeable brain fog. I've stopped the statin until I am able to discuss the issue with my PCP. I started to feel better after the statin had washed out of my system. Risk factors that indicate that I should be on a statin are low HDL and a high coronary artery calcium score.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

@daniel777

Red Yeast Rice has the same chemical structure that is used in prescription Statins thus explaining our same symptoms when using prescription statins. You might want to look into Repatha to avoid the muscle cramps. It cut my cholesterol almost in half and not muscle pains. It works a little different than oral statins and that is why it does not cause the muscle issues and frankly works much better. Best of luck!

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The Repatha side effects look pretty bad. Once you have the injection how do you deal with side effects for the two-four weeks before it leaves your system? Did you have any side effects? Thanks.

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@llynch17056

I tried red yeast rice for a couple of months, but had the same side effects as a statin and also experienced fluid retention. I’m stopping it today to see if the muscle aches and fluid retention go away. Has anyone tried Bempedoic Acid? If so, has your insurance company covered it if you are statin intolerant?

Jump to this post

Red Yeast Rice has the same chemical structure that is used in prescription Statins thus explaining our same symptoms when using prescription statins. You might want to look into Repatha to avoid the muscle cramps. It cut my cholesterol almost in half and not muscle pains. It works a little different than oral statins and that is why it does not cause the muscle issues and frankly works much better. Best of luck!

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@oldtex

Forget to mention that red yeast rice can also remove calcium from arteries and can add calcium to bones. At least, this is what I’ve picked up on the web.

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I tried red yeast rice for a couple of months, but had the same side effects as a statin and also experienced fluid retention. I’m stopping it today to see if the muscle aches and fluid retention go away. Has anyone tried Bempedoic Acid? If so, has your insurance company covered it if you are statin intolerant?

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Once you have tried all the statins available, your doc should be able to get your insurance to pay. I wish you good luck with this as Praluent is an excellent med for those of us unable to tolerate a statin.

Donna

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@reillyg1013

I also had that reaction to a statin, I compared it to someone pulling a thread inside my leg to make a gather., everything pulled inward. I stopped the meds , so my cardiologist suggested Praluent, but of course, insurance will not pay.

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I had the same complaints with statins that you describe. My doctor then prescribed Repatha, an injection every two weeks. My cholesterol readings went down and I have had no more problems.

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@degarden_girl

After about 9 months on a statin, I developed a weird muscle reaction. The muscles in my legs would tug inward. It was like I had an alien inside there plucking at the skin. I tried every statin on the market and all had the same side effect. Finally Praluent injectable medication received FDA approval for not only lowering cholesterol but also lowering risk of heart attack. I have been using that for years now; it has kept my cholesterol down around 150 - 160 however I came close to a heart attack and needed two cardiac stents last year. I have Lp(a) so even though the cholesterol and LDL were very low, the LDL I had was the really bad stuff.

I suggest if you can't tolerate statins, that you talk to your doctor about Praluent; it might require a battle with your drug insurance company to get it covered but it does work.

Donna

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I also had that reaction to a statin, I compared it to someone pulling a thread inside my leg to make a gather., everything pulled inward. I stopped the meds , so my cardiologist suggested Praluent, but of course, insurance will not pay.

REPLY

After about 9 months on a statin, I developed a weird muscle reaction. The muscles in my legs would tug inward. It was like I had an alien inside there plucking at the skin. I tried every statin on the market and all had the same side effect. Finally Praluent injectable medication received FDA approval for not only lowering cholesterol but also lowering risk of heart attack. I have been using that for years now; it has kept my cholesterol down around 150 - 160 however I came close to a heart attack and needed two cardiac stents last year. I have Lp(a) so even though the cholesterol and LDL were very low, the LDL I had was the really bad stuff.

I suggest if you can't tolerate statins, that you talk to your doctor about Praluent; it might require a battle with your drug insurance company to get it covered but it does work.

Donna

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@kanaazpereira

Hi @cindyt63,

There is no denying that many of the statin trials are funded by pharmaceutical companies, but it does raise the question if we are seeing the whole picture.
I thought it might help to post a few key notes from the most recent guidelines, (ACC/AHA), which emphasize that having high cholesterol “at any age” significantly increases the risk of cardiovascular disease. http://www.onlinejacc.org/content/73/24/e285?_ga=2.18947835.275792085.1564661742-2093008911.1564661742

– There is now a class I indication for reducing LDL cholesterol levels by 50% or more with a high-intensity statin (atorvastatin 40-80 mg and rosuvastatin 20-40 mg), or a maximally tolerated statin dose, in all patients with clinical atherosclerotic cardiovascular disease (ASCVD).

– For ASCVD patients at very high risk, such as those with a history of multiple events or one major ASCVD event and multiple high-risk conditions—and with LDL cholesterol ≥ 70 mg/dL—the guidelines recommend adding ezetimibe to maximally tolerated statin therapy in order to lower LDL levels.
If LDL still remains ≥ 70 mg/dL, adding a PCSK9 inhibitor such as alirocumab (Praluent; Regeneron/Sanofi) or evolocumab (Repatha; Amgen) is reasonable although the long-term safely of PCSK9 inhibitors is unknown.

– In the patient 40 to 75 years with diabetes, the guidelines recommend starting treatment with a moderate-intensity statin without assessing the 10-year risk of ASCVD (class I). If the diabetic patient has multiple high-risk features, or is 50 to 75 years old, consider using a high-intensity statin.

– For the first time, the new guideline also includes a Value Statement that underscores the need for clinicians and patients to factor in the cost of drugs in determining the most appropriate treatment rates.

With regard to Repatha (thanks for the suggestion), it is more often used to treat patients with heterozygous familial hypercholesterolemia, or with homozygous familial hypercholesterolemia (HoFH), who need additional lowering of their LDL cholesterol. https://www.mayoclinic.org/drugs-supplements/evolocumab-subcutaneous-route/side-effects/drg-20152627?p=1
Unfortunately, the cost of this drug (and others in the same class) is prohibitive – which is why the new guideline about statins includes a Value Statement.

I certainly don’t mean to inundate you with more reading:) but I’m hoping this article might shed some more light on the statin debate:
"AHA’s Statement on the Safety Profile of Statins: Big Benefit with Low Risk” https://professional.heart.org/professional/ScienceNews/UCM_503181_AHAs-Statement-on-the-Safety-Profile-of-Statins-Big-Benefit-with-Low-Risk.jsp

The treatment for high cholesterol is not one size fits all, and I wish we could get a conclusive answer. But it’s absolutely okay to question and disagree –as long as we do it in a way that is based in science. I hope to hear more from you and fellow Connect members - continue to further the conversation.

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My father and grandfather died of heart attacks. I am 76 years old. Due to high cholesterol my doctor, some years ago, tried me on a statin. I had extreme side effects. I tried numerous different statins at different doses, still with side effects to make me disabled to work snd bedridden. Over more than 10 years I have tried diet and exercise and have kept my cholesterol mostly in the lower end of high. Now it seems to have risen some and also my calcium scores as well. About 3 weeks ago I start on red yeast rice. I had some of the same side effects, but tolerable. I haven’t been tested yet on whether it will lower my cholesterol or not, I’ll do that after 3 months. HOWEVER, I started retaining fluid about the time I started the red yeast rice. I don’t know if it is a coincidence or if the red yeast rice is causing it. I am very active, drink lots of water, sweat a fair amount from my activities, eat a healthy diet, and have been doing yoga for 10 years. I don’t think I have ever retained fluid in my life before.

Does anyone know whether red yeast rice can cause fluid retention?

And, as mentioned in this thread, I can’t take a statin and have any quality of life whatsoever. Are there other alternatives? Or, maybe the red yeast rice is working but something else is causing fluid retention.

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@tsc

Hi @emo, Mayo Clinic has a post, "Cholesterol lowering supplements may be helpful", which you can Google. I remember reading this post by Dr. Andrew Weil about statin intolerance and alternatives. Here is the post, which you may find useful:

I seem to have some kind of severe sensitivity to statin medications; I ended up in the hospital with rhabdomyolysis. Would it be dangerous for me to take red yeast rice instead?

ANDREW WEIL, M.D. | JUNE 29, 2018
Statin drugs are used to help lower LDL (bad) cholesterol and protect against heart disease and heart attack. They do this by blocking the enzyme that enables the liver to produce cholesterol. While statins generally work well, some people can’t tolerate them. The most common adverse reaction is muscle pain or cramps (myalgias). The most serious is what you experienced: rhabdomyolysis. This rare condition is marked by the breakdown of muscle cells. Symptoms include severe muscle aches and weakness. Rhabdomyolysis can lead to kidney failure.
The risks for statin intolerance include advanced age (80 years or older), being female or Asian, and having pre-existing neuromuscular, kidney, or liver problems. In addition, excessive alcohol consumption, excessive exercise and consuming grapefruit can put you at risk. Red yeast rice contains natural statins. For many people it works as well as the prescription statins with a much lower incidence of adverse reactions. But with your history of rhabdomyolysis, you definitely should avoid it.
High LDL cholesterol in the blood is only one of a complex set of factors in the development of heart disease. Lowering it with a drug without addressing lifestyle choices is not good medicine.
I would advise you to make the following lifestyle changes:
Lose weight if you’re overweight.
Follow a diet that emphasizes vegetables and fruits, fish, particularly cold-water fish such as wild Alaskan salmon, mackerel, herring and black cod for their heart-healthy omega-3 fatty acids.
Reduce the amount of sugar and flour in your diet, particularly soft drinks and processed snack foods. Added sugar – in the form of table sugar (sucrose) or high-fructose corn syrup – probably contributes more to heart disease than saturated fat.
Avoid trans-fatty acids. These heart-damaging fats can reduce HDL (good) cholesterol levels and raise levels of LDL cholesterol. Trans-fats are found in many brands of margarine and in most heavily processed foods, such as chips, crackers and cookies, and in the oils used to cook fast-food French fries, doughnuts and movie popcorn.
Daily aerobic activity can help increase HDL levels.
Don’t smoke. Smoking is a major risk factor for heart disease.
Emotional stress may prompt the body to release fat into the bloodstream, raising cholesterol levels. Counter this with daily breathing exercises and other stress-reduction techniques such as yoga, meditation, guided imagery or tai chi.
Andrew Weil, M.D.

Source:
healthline.com/health/high-cholesterol/statin-intolerance-what-are-the-signs#symptoms

Jump to this post

Thank you so much for taking the time to share this. I really appreciate it!

REPLY

Hi @emo, Mayo Clinic has a post, "Cholesterol lowering supplements may be helpful", which you can Google. I remember reading this post by Dr. Andrew Weil about statin intolerance and alternatives. Here is the post, which you may find useful:

I seem to have some kind of severe sensitivity to statin medications; I ended up in the hospital with rhabdomyolysis. Would it be dangerous for me to take red yeast rice instead?

ANDREW WEIL, M.D. | JUNE 29, 2018
Statin drugs are used to help lower LDL (bad) cholesterol and protect against heart disease and heart attack. They do this by blocking the enzyme that enables the liver to produce cholesterol. While statins generally work well, some people can’t tolerate them. The most common adverse reaction is muscle pain or cramps (myalgias). The most serious is what you experienced: rhabdomyolysis. This rare condition is marked by the breakdown of muscle cells. Symptoms include severe muscle aches and weakness. Rhabdomyolysis can lead to kidney failure.
The risks for statin intolerance include advanced age (80 years or older), being female or Asian, and having pre-existing neuromuscular, kidney, or liver problems. In addition, excessive alcohol consumption, excessive exercise and consuming grapefruit can put you at risk. Red yeast rice contains natural statins. For many people it works as well as the prescription statins with a much lower incidence of adverse reactions. But with your history of rhabdomyolysis, you definitely should avoid it.
High LDL cholesterol in the blood is only one of a complex set of factors in the development of heart disease. Lowering it with a drug without addressing lifestyle choices is not good medicine.
I would advise you to make the following lifestyle changes:
Lose weight if you’re overweight.
Follow a diet that emphasizes vegetables and fruits, fish, particularly cold-water fish such as wild Alaskan salmon, mackerel, herring and black cod for their heart-healthy omega-3 fatty acids.
Reduce the amount of sugar and flour in your diet, particularly soft drinks and processed snack foods. Added sugar – in the form of table sugar (sucrose) or high-fructose corn syrup – probably contributes more to heart disease than saturated fat.
Avoid trans-fatty acids. These heart-damaging fats can reduce HDL (good) cholesterol levels and raise levels of LDL cholesterol. Trans-fats are found in many brands of margarine and in most heavily processed foods, such as chips, crackers and cookies, and in the oils used to cook fast-food French fries, doughnuts and movie popcorn.
Daily aerobic activity can help increase HDL levels.
Don’t smoke. Smoking is a major risk factor for heart disease.
Emotional stress may prompt the body to release fat into the bloodstream, raising cholesterol levels. Counter this with daily breathing exercises and other stress-reduction techniques such as yoga, meditation, guided imagery or tai chi.
Andrew Weil, M.D.

Source:
healthline.com/health/high-cholesterol/statin-intolerance-what-are-the-signs#symptoms

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