Started Repatha - Side Effects

Not sure this all relates to this thread, but I am considering all options. I have been taking Lipitor 20 mg for almost 2 years, with the side effects of muscle pain and weakness, cramps, and tendonitis. I have discussed with doctors and they decreased me to 3times a week, which did not help; allowed me a one week break, which didn't. help either. I finally got a note in my chart from my primary care mentioning I might need a statin break. I sent my cardiologist a long note about how my quality of life has gone down since starting statin therapy and that I hurt everyday. I've been to acupuncturist, PT, OT, massage therapy and do daily exercises. Recently had my lipid panel done and total 207, HDL 88 and LDL 85. He sent a note in the portal, "good job managing your levels, hope you are tolerating the statin". --- NO, I am not tolerating. That was over a week ago, and I just stopped taking the Lipitor. I've missed 4 doses in the past 10 days and I have at least 50-75% less pain overall. I don't get out of bed stiff, I don't hurt when I turn over in bed and I require less stretching to relieve pain. He would not give me his permission to do this. He mentioned trying a different statin, but I think they all do the same thing. Would Repatha be something I ask him about? I am not really much of a cardiac risk - calcium score of 0, blood pressure under control, no diabetes... I honestly do not feel I should need to live in pain and restricted activities just to lower my cholesterol a bit.

What is best Co Q10 ,
Take Costco one ?

I honestly can feel your pain. I was put on statins about 15 years ago. I had the same reaction. I tried to tell my doctor, but he wouldn’t hear it. Tried different statins, different doses, all the same. I was going to have to quit work and be disabled. That’s ridiculous. I took myself off of the statin. The next time I saw the doctor he said he was going to brand me a “non-compliant patient.” That was it I found another doctor. Before I committed to him I was assured that he would listen to me and manage my heart disease without statins. Fast forward. I completely changed my eating, started yoga, got a Fitbit and walk 6,000-10,000 steps a day. I was feeling great and my Chlorestrol was manageable. Then more than a decade later all of a sudden my Chlorestrol shot way up. I started talking Repatha. It brought it down, but I’m not sure whether I will continue Repatha or not. I tolerate it much better than statins, but I may quit it, too and get stricter on my life style. I want to feel good or what’s the point?

I am on Repatha and Nexletol. Nexletol is not a statin and does not give me any side effects. It is a bit spendy because it is new and no generic…but it feels good to know I am doing everything I can to avoid another NSTEMI.

I am also in the HORIZON clinical trial for Lp(a). Unfortunately, I am in the 99 percentile for high Lp(a). Not sure if I am on the placebo or not, but last CT angiogram showed plaque regression.

I have controlled my diet and lifestyle for 30 years…didn’t stop a premature NSTEMI. I am grateful for modern medicine and finding the right docs. It was not by accident…I read and vet all treatments and docs for my own patient empowerment. I have no problem changing to ones that will listen and do the right thing. Listening to the patient is my most important criteria for a good doctor, and I am grateful there are many out there…

I am on Repatha and Nexletol. Nexletol is not a statin and does not give me any side effects. It is a bit spendy because it is new and no generic…but it feels good to know I am doing everything I can to avoid another NSTEMI.

I am also in the HORIZON clinical trial for Lp(a). Unfortunately, I am in the 99 percentile for high Lp(a). Not sure if I am on the placebo or not, but last CT angiogram showed plaque regression.

I have controlled my diet and lifestyle for 30 years…didn’t stop a premature NSTEMI. I am grateful for modern medicine and finding the right docs. It was not by accident…I read and vet all treatments and docs for my own patient empowerment. I have no problem changing to ones that will listen and do the right thing. Listening to the patient is my most important criteria for a good doctor, and I am grateful there are many out there…

con123,

Grouping all statins together probably isn't accurate.

There are different chemistries - imo you should try alternative statins, then and only then, injectables.

Probably good advice. All the statins I tried, including Red Rice Yeast, had the same debilitating effect on me. But, we did try each type

I honestly can feel your pain. I was put on statins about 15 years ago. I had the same reaction. I tried to tell my doctor, but he wouldn’t hear it. Tried different statins, different doses, all the same. I was going to have to quit work and be disabled. That’s ridiculous. I took myself off of the statin. The next time I saw the doctor he said he was going to brand me a “non-compliant patient.” That was it I found another doctor. Before I committed to him I was assured that he would listen to me and manage my heart disease without statins. Fast forward. I completely changed my eating, started yoga, got a Fitbit and walk 6,000-10,000 steps a day. I was feeling great and my Chlorestrol was manageable. Then more than a decade later all of a sudden my Chlorestrol shot way up. I started talking Repatha. It brought it down, but I’m not sure whether I will continue Repatha or not. I tolerate it much better than statins, but I may quit it, too and get stricter on my life style. I want to feel good or what’s the point?

When my cholesterol spiked to 296 in 2022, my doctor called in a statin without even discussing it with me or giving me a chance to try lifestyle changes. I found a cardiologist who looked at just the number and told me I had to take statins to get it down. I had been in the mid 200's since 2009 and no one told me I had to take statins. Generally, my LDL wasnt' bad and my HDL was good. Even at 270 in 2021, statins were not prescribed. Don't you think we sometimes get a spike in a lipid test and it is worth a bit of a wait and re-taking the test? I do all the right life-style things - 66 and 127 lbs, average 10,000 steps a day, yoga, dance, kick-boxing; but one thing I did was significantly reduce meats in my diet. There isn't much more I can do in that department unless I could tolerate a completely vegan diet, which I can't. But I also cannot tolerate feeling like an ancient old lady everyday - getting out of bed stiff and sore all over. So, like you, I decided to be non-compliant for a bit, and I'm feeling so much better.