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.

@rochelle369

Dr. Esselstyn who was one of the first ones (along with Dr. Dean Ornish ) to show you can reverse or halt heart disease to eat no more than three fruit a day. I belong to a support group who follows Dr. Esselstyn's way and folks that eat more fruit their triglycerides go up with additional fruit. Also be careful of dried fruit.

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I also cannot tolerate statins. I have gotten side negative effects from all the oral ones. It is important I take this type of medication so I am now on Repatha injections every 2 weeks with no side effects. This seems to be a good alternative.

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@emo

Yes, I understand. I’m not disputing the research. It’s the research that informs the “guidance” from the Preventative Services Task Force that’s mention in the link you provided.

“ The U.S. Preventive Services Task Force recommends low- to moderate-dose statins in adults ages 40 to 75 who have one or more risk factors for heart and blood vessel disease and at least a 10% chance of having a cardiovascular disease event in the next 10 years.”

I meant that because of the guidance from the task force (prompted by the research) many physicians will recommend a statin for any patient who meets those criteria, without necessarily considering the totality of the patient (any other co-occurring conditions other than those listed, response to previous statins, religious beliefs, anything really).

My family has personally experienced this because time and time again, physicians, especially new providers and when my father was in the hospital would default recommend a statin, without considering why he isn’t taking a statin—because the first statin he took triggered an autoimmune response (a rare, but nonetheless real risk of statins) and the second causes acute liver damage within 2 weeks (which was confirmed during his hospital stay).

I am really glad statins exist because they help so many, but what frustrates me about the guidance from the Federal Services Task Force is when it’s used as a blanket instruction. My family has felt pressured, especially by those in the hospital, or even guilt-tripped about statins when while they’re the correct solution and lifesaving for many people, but they aren’t or weren’t for my father. Everyone’s different though; the recommendation to him from the specific specialists who know his history and case differ from the “guidance,” and could be for other people. I don’t want anyone to feel belittled the way we did, and I felt less so when I understood where the guidance they kept referring to, came from.
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/statins/art-20045772#:~:text=The%20U.S.%20Preventive%20Services%20Task%20Force%20recommends%20low%2D%20to%20moderate,in%20the%20next%2010%20years.

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Every "body" is different. That is why they call is "guidance".

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I know that there are several statins. Perhaps you could talk with your doctor and try another one...good luck !

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@mayoconnectuser1

I looked into it in the past, the Ornish diet, and I just couldn’t do it. I eat healthy, whole foods, organics, no sodas at all, no fast food at all, etc. and I still couldn’t do it. Were you able to? Thanks.

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@bbonchek

I also cannot tolerate statins. I have gotten side negative effects from all the oral ones. It is important I take this type of medication so I am now on Repatha injections every 2 weeks with no side effects. This seems to be a good alternative.

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Same for me. I tried a lot of different statins in different doses and finally quit them altogether about 10 years ago. I was able to keep my numbers in the high/normal range with diet and exercise then suddenly they shot up. I am now on Repatha without side effects. It can cause raised blood sugar. I have only been on Repatha for 6 weeks and will test blood sugar soon.

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@llynch17056

Same for me. I tried a lot of different statins in different doses and finally quit them altogether about 10 years ago. I was able to keep my numbers in the high/normal range with diet and exercise then suddenly they shot up. I am now on Repatha without side effects. It can cause raised blood sugar. I have only been on Repatha for 6 weeks and will test blood sugar soon.

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That’s interesting about your blood sugar possibly going too high while on Repatha. I have had the opposite happen where mine has gone too low. I’m keeping an eye on it. It is truly amazing how these drugs effect people so differently.

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Agree. I hope it has no effect on my blood sugar, I’ve never had a blood sugar issue. That would be enough to take me off of it.

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@llynch17056

Same for me. I tried a lot of different statins in different doses and finally quit them altogether about 10 years ago. I was able to keep my numbers in the high/normal range with diet and exercise then suddenly they shot up. I am now on Repatha without side effects. It can cause raised blood sugar. I have only been on Repatha for 6 weeks and will test blood sugar soon.

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My husband is on Repatha since a week, thanks for your information.

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@rainerhans

My husband is on Repatha since a week, thanks for your information.

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I tend to have side effects with everything and was very scared to do an injection because once it’s in there you can’t take it out, but to my surprise I’ve had almost no side effects. One day my muscles and joints hurt. That’s it. I’ll do a fasting blood panel soon to be sure it hasn’t raised my blood sugar.

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