Started Repatha - Side Effects

Posted by HomeAgainLA @llynch17056, Mar 21, 2024

I had terrible side effects with statins (any statin, any dosage). For about 30 years my doctors have pushed statins and
I have resisted. Finally I agreed to Repatha. The first week I had zero side effects. With my second dose, 2 weeks in, i woke up and my joints and muscles hurt a LOT.
1. Does this side effect go away?
2. What do you know about the recent information that the Repatha trials underreporting deaths from cardiac events while taking Repatha.

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Profile picture for swaimm1 @swaimm1

No. Was concerned that Repatha was the cause of my knee pain.

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Very likely was the cause. It makes everything hurt. My extreme low back pain has taken many months to get better, but is still there.

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Profile picture for jimfly96 @jimfly96

What do you mean when you say “so not repatha” ?
Are you saying Repatha caused knee arthritis ?

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That looks like exactly what the poster is saying, it was not from the medication it was osteoarthritis!

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Profile picture for con123 @con123

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.

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Hi, I am a newbie here. Female, 68 years old, and have been seeing a cardiologist since March after requesting a CAC and it coming back 1887! After all the tests, I have been diagnosed with CAD, PAD, small blockage in bottom of my heart, and the calcified plaque all over. Trying to avoid a stent for now. I had been on statins for over 25-30 years and had calf pain for probaby that long, when I walked to fast, or went up hills. Drs. always just checked my pulse on my ankles and said it was good. I also have Type 1 diabetes for 55 years, Hashimotos Thyroiditis. I just started Repatha last week and I praying for a miracle. I thought I would join here to try to keep up with peoples experiences.

I do feel that I have been let down by the medical community. With the diabetes, I have seen an endocrinologist every three months, plus a GP prob twice a year. I was never told that I was in a serious situation and yet I have seen that it takes decades for the calcium to continue to collect like this. Why don't they do the CAC tests to early and not wait until we are of this age? I had just gotten a letter from my GP in January that I was doing good, keep sugars down like I have, watch cholesterol, etc. then to find out I am in the 90 % for having a heart problem in within 5 years. I am just having a hard time dealing with this while at the same time trying to do whatever I can to possibly make it better or try to. Any advice from others? Thanks for listening!

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Profile picture for jnj7707 @jnj7707

Hi, I am a newbie here. Female, 68 years old, and have been seeing a cardiologist since March after requesting a CAC and it coming back 1887! After all the tests, I have been diagnosed with CAD, PAD, small blockage in bottom of my heart, and the calcified plaque all over. Trying to avoid a stent for now. I had been on statins for over 25-30 years and had calf pain for probaby that long, when I walked to fast, or went up hills. Drs. always just checked my pulse on my ankles and said it was good. I also have Type 1 diabetes for 55 years, Hashimotos Thyroiditis. I just started Repatha last week and I praying for a miracle. I thought I would join here to try to keep up with peoples experiences.

I do feel that I have been let down by the medical community. With the diabetes, I have seen an endocrinologist every three months, plus a GP prob twice a year. I was never told that I was in a serious situation and yet I have seen that it takes decades for the calcium to continue to collect like this. Why don't they do the CAC tests to early and not wait until we are of this age? I had just gotten a letter from my GP in January that I was doing good, keep sugars down like I have, watch cholesterol, etc. then to find out I am in the 90 % for having a heart problem in within 5 years. I am just having a hard time dealing with this while at the same time trying to do whatever I can to possibly make it better or try to. Any advice from others? Thanks for listening!

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I’m so sorry. I feel let down as well.

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Thank you! What is your health situation? Nita

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Cardiologist diagnosed me with CHD (coronary heart disease), but when I tried (many times, many different products and doses) statins, then Repatha with debilitating results (unable to move due to joint pain) my cardiologist said, “if you can’t take statins or Repatha then I have nothing for you.” When I told me Internist, he said, “what’s the good of a low cholesterol number if you can get out of bed?” My Internist sees me as a person.
I have had high cholesterol for decades. My father had heart disease and died of a heart attack at age 85.

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Profile picture for HomeAgainLA @llynch17056

Cardiologist diagnosed me with CHD (coronary heart disease), but when I tried (many times, many different products and doses) statins, then Repatha with debilitating results (unable to move due to joint pain) my cardiologist said, “if you can’t take statins or Repatha then I have nothing for you.” When I told me Internist, he said, “what’s the good of a low cholesterol number if you can get out of bed?” My Internist sees me as a person.
I have had high cholesterol for decades. My father had heart disease and died of a heart attack at age 85.

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I wonder why your cardiologist didn’t try Inclisiran, the siRNA for LDL? Not that I know anything except that the drug is out there.

I wonder whether the high LDL is useful in some way for some people? My cardiologist says no because the brain makes plenty of LDL even when you rid the body of some of it with statins or Repatha. I have low confidence in that explanation.

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Profile picture for tatiana987 @tatiana987

I wonder why your cardiologist didn’t try Inclisiran, the siRNA for LDL? Not that I know anything except that the drug is out there.

I wonder whether the high LDL is useful in some way for some people? My cardiologist says no because the brain makes plenty of LDL even when you rid the body of some of it with statins or Repatha. I have low confidence in that explanation.

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Hi @tatiana987. I like your suggestion. Repatha didn’t work well for me. I have now had 5 Inclisiran injections and my cholesterol has never been better controlled. A previous doctor kept telling me Inclisiran is the same thing and won’t work for me. He was wrong!

Are you taking Repatha again, or anything else for high cholesterol? Have you been able to learn more about siRNA type drugs since we last “chatted”?

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Thanks for your interest. No, I will not be returning to Repatha. I have not yet tried Inclisiran and my LDL is not as high as before Repatha but not good. 160.

I am a bit concerned that an siRNA may not leave the body easily or quickly. There may be unplanned effects and they may last a while. I have MS so nothing medical is obvious. What I read may or may not be valid in this old, idiosyncratic body.

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Profile picture for Janell, Volunteer Mentor @jlharsh

Hi @tatiana987. I like your suggestion. Repatha didn’t work well for me. I have now had 5 Inclisiran injections and my cholesterol has never been better controlled. A previous doctor kept telling me Inclisiran is the same thing and won’t work for me. He was wrong!

Are you taking Repatha again, or anything else for high cholesterol? Have you been able to learn more about siRNA type drugs since we last “chatted”?

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That is very interesting. Thank you for suggesting it. Inclisiran can have bad side effects and it’s a twice a year injection, so if I were to have the side effects, which I probably would, you can’t just stop taking it, it’s in your system for 6 months. That really scares me. Side effects: more expensive and have side effects such as injection site reactions (e.g., redness, swelling, pain), flu-like symptoms (e.g., fatigue, headache), and symptoms of upper respiratory tract infections, which need to be taken into consideration when using them clinically. My body is so tired of experimenting with drugs that make me so sick and take so long to recover.

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