Statin Intolerance

Posted by tim1028 @tim1028, Tue, Jun 4 8:51pm

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.

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.

Liked by Leonard

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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 see this is an older post but I also have muscle pain from statins. I was taking 40 mg once a day but cut it in half (dr said to try that before stopping it altogether which was my plan) He also suggested CoQ-10. Cutting it back took away the pain and my cholostral was really good.. All numbers were great but the OVERALL went from 260 to 145 in just 4 months. MY PLAN is 3 months before my next test I'll stop it and see if it's still good since I'm over all an anti Rx person. I don't want to take any Rx's unless there is no way around it.

Liked by Leonard

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My husband and I had the muscle pain, etc. from statin use. My husband's doctor tried different statins on him with the same results. All statins have the same side effects. His doctor also tried medications that were not statins. Those didn't affect his levels any more than the statins did. Eventually he stopped all cholestrol lowering medications. I stopped taking the statin and refuse to take anything to lower my cholesterol.

My levels remain the same at 245 total. I have had high calcium levels that were caused by a diseased parathyroid gland. Once that was removed the calcium levels returned to normal. I did a great deal of research on cholesterol and our bodies. I learned that our bodies make cholesterol and that it is vital for brain function. Statins remove cholesterol from the blood and doesn't distinguish between what the body makes and what we ingest. When I started my research over 20 years ago the goal was to get the cholesterol level under 200 now it is under 100 and the lower the better.

My PCP uses a mathematical equation to determine my probability of having a heart attack over the last few years I have a 3% chance of having a heart attack in the next 10 years. I am 64 if it weren't for other physical issues I would be in great shape.

On a final note, I learned that statins only help about 1 in every 100,000 people. The other 99,999 get no benefit but do suffer with the side effects. My PCP confirmed this and I decided the odds weren't good enough for me to deal with the side effects which can be debilitating for many. There is a new drug Repatha that is not a statin but is an injection.

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@cindyt63

My husband and I had the muscle pain, etc. from statin use. My husband's doctor tried different statins on him with the same results. All statins have the same side effects. His doctor also tried medications that were not statins. Those didn't affect his levels any more than the statins did. Eventually he stopped all cholestrol lowering medications. I stopped taking the statin and refuse to take anything to lower my cholesterol.

My levels remain the same at 245 total. I have had high calcium levels that were caused by a diseased parathyroid gland. Once that was removed the calcium levels returned to normal. I did a great deal of research on cholesterol and our bodies. I learned that our bodies make cholesterol and that it is vital for brain function. Statins remove cholesterol from the blood and doesn't distinguish between what the body makes and what we ingest. When I started my research over 20 years ago the goal was to get the cholesterol level under 200 now it is under 100 and the lower the better.

My PCP uses a mathematical equation to determine my probability of having a heart attack over the last few years I have a 3% chance of having a heart attack in the next 10 years. I am 64 if it weren't for other physical issues I would be in great shape.

On a final note, I learned that statins only help about 1 in every 100,000 people. The other 99,999 get no benefit but do suffer with the side effects. My PCP confirmed this and I decided the odds weren't good enough for me to deal with the side effects which can be debilitating for many. There is a new drug Repatha that is not a statin but is an injection.

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@cindy63 Hi Cindy Ive been reading your post and glad you did you homework about statins. Id like to tell you my story . Back in 1996 I had a triple by pass my arteries where clogged by plaque 90,85,80% After the surgery the Dr. told my to get of off red meat I haven't had any but occasionally since then . One time I did eat some stroganoff and could smell the fat in it so my dog got the meat. I have been on statins since to reduce my cholesterol from high of 285 the only one that has brought it down is Crestor but you need to take CoQ10 with it . Our bodies make both but when the cholesterol is to high like that then you don't want to risk the chance of having a heart attack which might be final for you. Cindy talk to your Dr. more about this. I belive in holistic health but I will take Crestor. I'm 76 and only on 3 meds. Its imperative to get daily exercise which I do other then my back problems I'm in great shape.

Liked by Leonard

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@cindyt63

My husband and I had the muscle pain, etc. from statin use. My husband's doctor tried different statins on him with the same results. All statins have the same side effects. His doctor also tried medications that were not statins. Those didn't affect his levels any more than the statins did. Eventually he stopped all cholestrol lowering medications. I stopped taking the statin and refuse to take anything to lower my cholesterol.

My levels remain the same at 245 total. I have had high calcium levels that were caused by a diseased parathyroid gland. Once that was removed the calcium levels returned to normal. I did a great deal of research on cholesterol and our bodies. I learned that our bodies make cholesterol and that it is vital for brain function. Statins remove cholesterol from the blood and doesn't distinguish between what the body makes and what we ingest. When I started my research over 20 years ago the goal was to get the cholesterol level under 200 now it is under 100 and the lower the better.

My PCP uses a mathematical equation to determine my probability of having a heart attack over the last few years I have a 3% chance of having a heart attack in the next 10 years. I am 64 if it weren't for other physical issues I would be in great shape.

On a final note, I learned that statins only help about 1 in every 100,000 people. The other 99,999 get no benefit but do suffer with the side effects. My PCP confirmed this and I decided the odds weren't good enough for me to deal with the side effects which can be debilitating for many. There is a new drug Repatha that is not a statin but is an injection.

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@cindyt63
Hello Cindy,
May I be so bold as to ask where you acquired the figure that only 1 in 100,000 people are helped by statins, a number you claim is confirmed by your physician. IF, my math is correct your saying out of the approximately 200,000,000 people on statins only 2,000 benefit worldwide and of the 35,000,000 people in the U.S. only 350 users are benefiting? Where those numbers typos?
I was on Lipitor for awhile and my numbers lowered to normal. I lost a lot of weight, started eating properly and exercised and my numbers have remained normal.
Jake

Liked by lioness

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@jakedduck1

@cindyt63
Hello Cindy,
May I be so bold as to ask where you acquired the figure that only 1 in 100,000 people are helped by statins, a number you claim is confirmed by your physician. IF, my math is correct your saying out of the approximately 200,000,000 people on statins only 2,000 benefit worldwide and of the 35,000,000 people in the U.S. only 350 users are benefiting? Where those numbers typos?
I was on Lipitor for awhile and my numbers lowered to normal. I lost a lot of weight, started eating properly and exercised and my numbers have remained normal.
Jake

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@jakeduck1

Hi Leonard (also my husband's name) I don't recall where I got the figures it was several years ago. My PCP did confirm the numbers. When I began my research over 20 years ago when my husband was put on Lipitor after a massive heart attack, my first stop was the manufacturer's website. I read all the reports, etc. that most people never see. This is where I learned of the side effects no one was talking about; the muscle weakness, the paralysis, etc. From the manufacturer's website I moved on to reviews from people who were or had taken the drug knowing that generally only those that have a issue would post anything. I then moved on to drug reviewers and anything else I could get my hands on. The numbers were mentioned more than once.

If you have been one of the 'lucky' ones that could take Lipitor and not have the side effects, that is wonderful. Others are not that fortunate, either it does nothing for them or they get the side effects. In the past I have talked with people who became paralyzed and unable to function even on a cerebral level.

Liked by Leonard

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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.

Liked by thankful, Leonard

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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.

Jump to this post

Having ruled out four of the six statins available because my reaction to them is muscle pain that is debilitating, I have to ask what am I to do? If I never saw another statin I would be happy but there are all those studies that say they are necessary. I am 74 and had a heart attack in January of 2016. At that time my cholesterol was within normal range but each time I have taken statins, upon cessation of the drug (after taking them for 4-8 months) I see a definite increase in numbers above what they were when I started. My question would be does taking the statin which reduces my cholesterol, alter the normal function of my body artificially increasing numbers. The idea that anyone should live in pain to take this medication should be unacceptable to any patient and their doctor but I am fearful that not taking them will somehow kill me. Can the alternatives be taken effectively without a statin? The class such as Repatha et.al are very expensive… Any suggestions?

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@damecarol

Having ruled out four of the six statins available because my reaction to them is muscle pain that is debilitating, I have to ask what am I to do? If I never saw another statin I would be happy but there are all those studies that say they are necessary. I am 74 and had a heart attack in January of 2016. At that time my cholesterol was within normal range but each time I have taken statins, upon cessation of the drug (after taking them for 4-8 months) I see a definite increase in numbers above what they were when I started. My question would be does taking the statin which reduces my cholesterol, alter the normal function of my body artificially increasing numbers. The idea that anyone should live in pain to take this medication should be unacceptable to any patient and their doctor but I am fearful that not taking them will somehow kill me. Can the alternatives be taken effectively without a statin? The class such as Repatha et.al are very expensive… Any suggestions?

Jump to this post

@damecarol After I had my by pass surgery due to a lot of cholesterol in my arteries the Dr. tried my on about 10 different statins when Crestor came out I tried it and it did bring my numbers down to almost normal next blood work hopefully will show they are within normal range. Maybe try another statin. The 2 that did work for me was Tri-core and Crestor buy my Dr. kept my on Crestor

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@damecarol

Having ruled out four of the six statins available because my reaction to them is muscle pain that is debilitating, I have to ask what am I to do? If I never saw another statin I would be happy but there are all those studies that say they are necessary. I am 74 and had a heart attack in January of 2016. At that time my cholesterol was within normal range but each time I have taken statins, upon cessation of the drug (after taking them for 4-8 months) I see a definite increase in numbers above what they were when I started. My question would be does taking the statin which reduces my cholesterol, alter the normal function of my body artificially increasing numbers. The idea that anyone should live in pain to take this medication should be unacceptable to any patient and their doctor but I am fearful that not taking them will somehow kill me. Can the alternatives be taken effectively without a statin? The class such as Repatha et.al are very expensive… Any suggestions?

Jump to this post

@damecarol
Hello,
I’d like to ask a few questions if I may, is there a history of heart disease in your family?
Do you have high blood pressure or Diabetes?
Do you smoke?
Are you over overweight?
EVERY drug comes with risks and benefits and potential side effects. Muscle pain happens in about 10% of patients. Ask your doctor about other types of Cholesterol lowering medications you may be able to tolerate. Your doctor may have prescribed you statins because of your risk factors or because you had a heart attack. Statins aren’t given solely based on numbers anymore.
Make sure your lifestyle choices aren’t contributing to your cholesterol problem? How’s your diet & weight do you exercise. After I started making better choices my Cholesterol has been great. As far as living in pain because of statins I’m sure no one expects you to do that. If your doctor isn’t offering you other options it may be time for a new one.
Health and happiness,
Jake

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Answers to questions:
Unfortunately I have an unknown family history of heart disease because I was adopted.
My blood pressure is currently controlled with Lisinopril and Metoprolol ER 118/61 and I don't have Diabetes.
I haven't smoked in 36 years and I am not overweight.
I was prescribed a statin after my HA and as I said they did reduce the numbers but caused side effects.
I am very limited to food choices because of food allergies so I eat a pretty good diet.
I walk daily 5-7 thousand steps measured by my fitbit for the last three years.
As I said I have taken 4 of the 6 available statins with allergic results.
I do plan on speaking to my cardiologist my next appointment about alternatives but hoped someone on the board would have some useful experience with some of the alternatives.
Thank you for your input.
Carol

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Hi @damecarol,

You might also be interested in going through this Connect discussion, where you’ll meet @tim1028 @bluesdoc @mark430 @carlreisen @jimk849 and many others who’ve shared some great insights about statins.
https://connect.mayoclinic.org/discussion/high-calcium-score/

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