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.

@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 have been in the natural combination of Red Yeast Rice+ Niacin Flush Free + GNC Omega 3-6-9. This has successfully controlled my Cholesterol level together with controlled diet. I heard several preconception about leg muscle pains & weakness.

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LDL is only one part of the equation
family history, lifestyle, diet, stress etc... also play a part along with triglyceride and HDL levels

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@kam

Statins elevated my liver enzymes so a year ago I was taken off of them. I have tried to control my cholesterol with a low fat diet and take Gemfibrozil to lower triglycerides. A few weeks ago I noticed a white/yellow line on my eyelid and white patches in the corner of each eye, called Xanthelasma (lipid deposits that form around the eye due to elevated LDL). I had blood work completed and my Total Cholesterol was 274, HDL 48, Triglicerides 95 and LDL 207. My PCP tells me to just watch my diet. I have an appointment with a cardiologist who also manages cholesterol but not until the end of October. I've been monitoring my diet very closely, but know it takes time to lower LDL. More Xanthelasma seem to be appearing daily. Has anyone had this happen and how concerned should I be?

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I am intolerant to statins also, Gemfibrozil didnt work for me either, I have just started Zetia, which is expensive and my blood work is due in a few weeks to see if it is working. The doctor says it is much different than the statins, so far I am back to leg muscle weakness again, dont know what the doctor will do now?

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@mariserodriguez

I have been in the natural combination of Red Yeast Rice+ Niacin Flush Free + GNC Omega 3-6-9. This has successfully controlled my Cholesterol level together with controlled diet. I heard several preconception about leg muscle pains & weakness.

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Is Omega 3..6..9 another fish gel capsule? I burp fish for hours later, terrible for me!

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@gator123

Cq10 really works

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Hummm, it didnt lower my reading?

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@hmccarth5

Is Omega 3..6..9 another fish gel capsule? I burp fish for hours later, terrible for me!

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I use Ultimate Omega. Instead of fish, I burp orange, but that's a lot better!

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@alanaspeck

Thank you backing up the importance of statins. In my family we have a genetic disorder which causes us to have super high cholesterol despite eating a healthy diet. It has been the killer on my mom's side. My cholesterol is over 300 and that's after months if Lipitor. So Cardiologist doubled my dose. Yes, I get the "muscle" pain but I already deal with extreme chronic pain anyway and take meds for it so...I'm a lil tougher than that and will deal with it so I do not have a 4th heart attack.
Just my opinion but I'm less likely to take my cardiovascular health into my own hands based on numbers I took off the internet. And I would certainly be doubtful of a Dr whom agreed. I have a pacemaker and received diagnosis of DVT this week.
I will add the COQ10 to my regimen though. Thanks for the tip.
Listen to your Drs folks. Stay knowledgeable but don't second guess your Drs based on the internet. It could be the difference between life and death! This is your CARDIOVASCULAR HEALTH not a common cold.❤

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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!

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@hmccarth5

I am intolerant to statins also, Gemfibrozil didnt work for me either, I have just started Zetia, which is expensive and my blood work is due in a few weeks to see if it is working. The doctor says it is much different than the statins, so far I am back to leg muscle weakness again, dont know what the doctor will do now?

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I could not take statins. Now on an injectable monoclonal antibody called Repatha which is self-administered twice a month (looks like an epi-pen). It hasl owered my cholesterol.

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My doctor was unable to do anything for me until Repatha (Amgen is drug co) became available. Unable to tolerate statins. This is a self-administered injectable twice a month. It has lowered my cholesterol.

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@sue225

I could not take statins. Now on an injectable monoclonal antibody called Repatha which is self-administered twice a month (looks like an epi-pen). It hasl owered my cholesterol.

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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.

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