Statin Intolerance: What did you do?

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.

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?

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?

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.

@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

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.