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.

@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?

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@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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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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@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 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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@damecarol

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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@damecarol Hi I know how it is so frustrating about statins. My story In 1996 I had a by pass due to cholesterol or plaque . In the last 10 0r so years the Dr. tried me on all kinds of statins. I have a high count over 250 -300 at one time. Then finally a statin called Crestor was given to me it was a new drug at that time and is the only one that not only has brought my cholesterol down but I don't have any side effects from it ,no muscle pain either . So don't give up ask your Dr. about crestor or Rovostatin.

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lioness, Thank you for the encouragement I am now taking 5mg of Crestor with CoQ10 200mg each day. I have taken it before without too much pain at 5mg but a problem arises when they raise the dosage. I will not be taking over 5mg. I stressed that to my doctor!

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@damecarol

lioness, Thank you for the encouragement I am now taking 5mg of Crestor with CoQ10 200mg each day. I have taken it before without too much pain at 5mg but a problem arises when they raise the dosage. I will not be taking over 5mg. I stressed that to my doctor!

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@damecarol I hope it helps you as it is me , ONe other one that helped but Dr said it worked more on the triglycerides is Triclor . And yes even though our bodies make CoQ 10 we need more as we age as with all vitamins and minerals. Good luck

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@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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Red yeast rice has the same side effects as statins and quality can't be guaranteed. Be careful if you use it.

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@lioness

@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.

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Cq10 really works

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