Statin Intolerance: What did you do?

Two decades ago I saw the head of the Lipidology Clinic at Johns Hopkins. My two siblings and I have an inherited lipid disorder (a mouthful - familial hyperlipoproteinia ! I got the diagnosis from him.). My tryglicerides were well over 800 just for one.

He told me there was nothing to be done until they developed gene therapy - and for the meantime to take statins, that my body basically manufactured excess cholesterol.

Then he glanced at a textbook (I don't recall a computer involved LOL) and identified the type of the disorder he thought we had, plus the subtype. Said that perhaps if I lost weight, exercised, avoided all refined carbs and alcohol, I would improve.

I did all the above and sure enough my lipid panel decreased to an almost normal level. Since then I've been trying to continue this healthy behavior, though not quite making it on the carbs and alcohol, and have been battling the lipids panels reading. I'm the only sibling to avoid statins. (my parents took statins too).

Both brothers, one especially, developed rhabdomyalysis, one to the point it was damaging his kidneys. That brother had had a heart attack before age 40, and in fact, was scheduled for surgery (one or two stents, at least) when he passed away in his sleep last year. It was before the operation.

My cardiologist (seeing me mostly for AFIB) told me I HAD to start statins owing to my lipid creep - weight creep at the same time, not by coincidence. I pleaded with him to give me another chance, and he gave me six months at most.

I went on the KETO diet, bringing my weight down to very slender and he told me, my lipids results were "perfect". Hooray, no statins! (It was sheer hell to do without carbs so rigidly). He said the diet contradicted everything he'd learned in med school, but there was no contradicting the results. Now my weight has crept up again and though I haven't checked my labs yet, I'm back on KETO hoping and praying I can maintain it , while being always worried about the level of saturated fats I'm consuming.

Just bear in mind, you with inherited lipid issues, that there ARE behavioral approaches that may help you avoid statins (I also take several supplements high in Omega-3s ) . If you aren't sure, you might want to consult a super specialist - lipidologist - like me. Statins DO have side effects as this thread proves. One that especially motivated me to avoid them, is that they apparently contribute to dementia! My memory problems are already worrying, so that helped me make the needed effort.

Go for it!

I too could not tolerate statins, cardiologists switched me to red yeast rice 2/day with meals. Same ingredients as statins but less side effects. Check it out on the internet and you will find other advantages. He recommended the brand CHOLESTENE HPD 600 mg per pill. Its over the counter and on eBay.

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

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.

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