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.

I was statin intolerant. I tried different statins in different doses and still had completely debilitating side effects. I have taken Metamucil everyday for decades, I eat healthy, keep my weight down and exercise. After decades of pushing me to take statins and even switching doctors over this issue, I finally started Repatha three weeks ago. Ive been ok. One bad day, but better after that. I also tried coq10 which made me feel like I was taking statins. I will continue repatha as long as I can tolerate it as well as I have so far. I also read that repatha removes some plaque, doesn’t just reduce the numbers. Yesterday I read that the course of treatment is two years. I will read up more on that because I really like the idea that it’s not a forever drug.

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@funcountess

You are doing everything right. Our bodies naturally make cholesterol.
Stick with your diet, try not to worry too much.

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Unfortunately low density lipids are the fats that are sticky and. clumps in our arteries. And for some Of us, that’s true no matter how otherwise healthy we are. My dad died of a heart attack at 38. My brother has had double bypass surgery after years of exercising hard and taking meds (but not being very stringent with diet). My son is on statins and an extremely low fat diet. I take statin and have recently changed my diet to low fat and am acclimating to it.

I find gastric symptoms like constipation and gas are my chief complaints. I try to stay hydrated and take 2-4 benefiber gummies after dinner. That usually gets me going the next morning. If not, the next night I have a bowl of bran flakes with almond milk and chew fiber gummies again. I actually eat 3-4 benefiber gummies before bed every night. You can mix powder in liquid and drink it but I don’t like that.
It beats not addressing it.

Good luck.

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@jeridenn

I have high LDL cholesterol and my doctor has prescribed several different statins for me, all of which I could not tolerate. The latest one he's prescribed is ezetimibe which I have yet to try.

I feel like a guinea pig with all these tests. The side effects are not anything I care to experience, either. https://my.clevelandclinic.org/health/drugs/20153-ezetimibe-tablets. They include skin rash, face, lips and throat swelling, joint pain, diarrhea, and possibly others not mentioned.

I'm trying to find a natural alternative. The high LDL cholesterol is the only negative in my labs. Everything else is normal. After losing 60 pounds over the course of a year, I had to go back on 1 50mg Losartan tablet daily for blood pressure. My BP is now very good - in the 116/74 range daily.

I exercise an hour daily walking and stationary bike and have a good diet eating mostly chicken, turkey, and fish and lots of fruits and vegetables. I cook from scratch, use avocado oil and ghee, and read labels. Even my husband does since I am gluten intolerant and have some food sensitivities. We don't buy products (condiments, etc.) with unhealthy additives or that are high in saturated fats. I'm reducing my salt intake even though it's normal (140 and the range is 135-245) which may help according to my doctor. My glucose is 83. My calcium is 8.9 (range is 8.7-10.4). So all labs are good except this high LDL. My father had blocked carotids due to triglyceride build-up, but he had a high fat diet, which I don't.

Any suggestions about natural alternatives to reduce high LDL are welcome.
Thanks!

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You are doing everything right. Our bodies naturally make cholesterol.
Stick with your diet, try not to worry too much.

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@jeridenn

I have high LDL cholesterol and my doctor has prescribed several different statins for me, all of which I could not tolerate. The latest one he's prescribed is ezetimibe which I have yet to try.

I feel like a guinea pig with all these tests. The side effects are not anything I care to experience, either. https://my.clevelandclinic.org/health/drugs/20153-ezetimibe-tablets. They include skin rash, face, lips and throat swelling, joint pain, diarrhea, and possibly others not mentioned.

I'm trying to find a natural alternative. The high LDL cholesterol is the only negative in my labs. Everything else is normal. After losing 60 pounds over the course of a year, I had to go back on 1 50mg Losartan tablet daily for blood pressure. My BP is now very good - in the 116/74 range daily.

I exercise an hour daily walking and stationary bike and have a good diet eating mostly chicken, turkey, and fish and lots of fruits and vegetables. I cook from scratch, use avocado oil and ghee, and read labels. Even my husband does since I am gluten intolerant and have some food sensitivities. We don't buy products (condiments, etc.) with unhealthy additives or that are high in saturated fats. I'm reducing my salt intake even though it's normal (140 and the range is 135-245) which may help according to my doctor. My glucose is 83. My calcium is 8.9 (range is 8.7-10.4). So all labs are good except this high LDL. My father had blocked carotids due to triglyceride build-up, but he had a high fat diet, which I don't.

Any suggestions about natural alternatives to reduce high LDL are welcome.
Thanks!

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Plant sterols have above average evidence behind them. My father’s neurologist recommended that because he also can’t tolerate statins. We tried Cholesto-pure by Pure Encapsulations. It’s pricey, but not a statin. The mechanism of action is similar to Zetia (what you’re doctor prescribed). Even natural solutions also have side effects though. It draws out cholesterol through the stool. My dad couldn’t tolerate it because of GI side effects, but he had other co-occurring GI conditions.
https://my.clevelandclinic.org/health/drugs/17368-phytosterols-sterols--stanols
I understand and can totally relate to being displeased with the uncertainty and potential side effects, but not everyone experiences those side effects. That said, I’m still very cautious because I know my body and I’m sensitive to medications, even those that are “generally well tolerated,” so it comes down for me to how willing I am to take the risk.

For what it’s worth, most people I know who’ve been on Zetia have had no issues with it, even when they couldn’t tolerate other statins, so it may be worth trying. One strategy I use is to take half of the suggested dose (if it can be done safely). That way I can see how well I tolerate it and if I end up needing less, that’s even better.

His cardiologist also recommended psyllium fiber (Metamucil). That didn’t work for him either, so he used a generic form of the SunFiber supplement—it completely dissolves in anything and has no flavor. The brand we use is Healthy Origins I think—has a yellow cap on it.

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I know that is frustrating . What is your LDL now?

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I have high LDL cholesterol and my doctor has prescribed several different statins for me, all of which I could not tolerate. The latest one he's prescribed is ezetimibe which I have yet to try.

I feel like a guinea pig with all these tests. The side effects are not anything I care to experience, either. https://my.clevelandclinic.org/health/drugs/20153-ezetimibe-tablets. They include skin rash, face, lips and throat swelling, joint pain, diarrhea, and possibly others not mentioned.

I'm trying to find a natural alternative. The high LDL cholesterol is the only negative in my labs. Everything else is normal. After losing 60 pounds over the course of a year, I had to go back on 1 50mg Losartan tablet daily for blood pressure. My BP is now very good - in the 116/74 range daily.

I exercise an hour daily walking and stationary bike and have a good diet eating mostly chicken, turkey, and fish and lots of fruits and vegetables. I cook from scratch, use avocado oil and ghee, and read labels. Even my husband does since I am gluten intolerant and have some food sensitivities. We don't buy products (condiments, etc.) with unhealthy additives or that are high in saturated fats. I'm reducing my salt intake even though it's normal (140 and the range is 135-245) which may help according to my doctor. My glucose is 83. My calcium is 8.9 (range is 8.7-10.4). So all labs are good except this high LDL. My father had blocked carotids due to triglyceride build-up, but he had a high fat diet, which I don't.

Any suggestions about natural alternatives to reduce high LDL are welcome.
Thanks!

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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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Thank you. I read about the Repatha side effects which scare me. And, since Repatha is an injection, if i have a reaction, and i tend to have reactions to most medications, how do you stop the reactions to something already in my system via injection? I can’t take any statins, my doctor tried me on several, then 1/2 dose, then 1/2 dose every other day. I had debilitating side effects each time. Not just unpleasant, but unable to function. I even recently tried red yeast rice and had the same intense side effects including itching welts and had to stop that. I want to reduce my cholesterol levels but don’t see a way to do it. I exercise and eat a pretty clean diet. My weight is good. There is heart disease on my father’s side of the family. My father and grandfather died of heart attacks. They both smoked. I don’t smoke.

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@daniel777

I felt the same way. I tried all the oral Statins and ALL gave me muscle cramps. I was offered Repatha when it first came out and thought like you. But my self and my doctor agreed to give it a try and low and behold no issues at all. I understand your concern but Statins have along with all drugs a whole list of POSSIBLE side effects. If you try it and it works you will be glad you used it to lower your cholesterol. Personally, for myself it was worth the gamble. Best of luck and keep us posted on your progress.

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Thank you.

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@llynch17056

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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I felt the same way. I tried all the oral Statins and ALL gave me muscle cramps. I was offered Repatha when it first came out and thought like you. But my self and my doctor agreed to give it a try and low and behold no issues at all. I understand your concern but Statins have along with all drugs a whole list of POSSIBLE side effects. If you try it and it works you will be glad you used it to lower your cholesterol. Personally, for myself it was worth the gamble. Best of luck and keep us posted on your progress.

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@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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While there is certainly evidence that red yeast rice is statin-like ... this has been known for quite awhile, there are concerns regarding quality and purity across the medical spectrum.

Lots of articles ...
https://www.hopkinsmedicine.org/health/wellness-and-prevention/the-truth-about-4-popular-heart-health-supplements
https://www.webmd.com/vitamins/ai/ingredientmono-925/red-yeast-rice
https://www.webmd.com/cholesterol-management/red-yeast-rice
https://www.frontiersin.org/articles/10.3389/fphar.2021.819482/full

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