Statin Intolerance: What did you do?

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.

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!

@gema98, High cholesterol is one of the symptoms with PBC / liver cirrhosis. Your hepatologist will be able to advise you. When my liver developed cirrhosis with my PSC, my cholesterol was high, too. That was 13 years ago, so please forgive me for not remembering if it was treated.

My Medicare Advantage plan would not pay for it, I am going to talk to my hepatologist about the cholesterol as I have PBC now cirrhosis when I see him I. April.

I am also unable to take any statins due to severe adverse reactions. My cardiologist recommended Repatha but said special paperwork was needed because it was very expensive. I am 70 and on Medicare. How much does it cost per injection and what are the side effects? Never heard back from his office so apparently I wasn’t approved as he said they would call me and it’s been 8 months.

Thank you! Glad you had good results with no side effects. I will continue to work on trying to find a way to get better coverage here. Have a great day!