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 con123 @con123

Update to this post, I tried and could not tolerate Repatha either so I’m on supplements and hoping for the best.

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@con123 I tried semi-glutide because I wanted to lose a few pounds, but mainly because it is supposed to help with cholesterol. I couldn’t take it, I was way too nauseated, but I switched to Terzepitide with no side effects and it is also supposed to help with cholesterol numbers. I haven’t had a lipid panel since I’ve been on it but will report here when I do. I lost about 12 pounds which is what I wanted to lose. I am uncertain about it because it’s a newer drug and only heaven knows what it does to you.

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Profile picture for tatiana987 @tatiana987

@wgr123 I had frequent falls on Repatha. It took a while to figure out the cause of my falls, but once the half-life period of detox from the drug was past, the problem was gone completely for me. I found the half life prediction extremely accurate. I had marked the last date Repatha could be in my body on a calendar and looked forward to freedom day (full detox). Never any problem at all after that date.

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@tatiana987 Thank you for the response. Did your side effects lessen as you approached the end date, or did they stay at the same intensity until the end of the half-life?

I've been seeing 60–90 days roughly to clear. I'm at day 87 and I had just started to think I was feeling better, not so stiff, but today the stiffness is back full force.

TIA

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Profile picture for wgr123 @wgr123

@tatiana987 Thank you for the response. Did your side effects lessen as you approached the end date, or did they stay at the same intensity until the end of the half-life?

I've been seeing 60–90 days roughly to clear. I'm at day 87 and I had just started to think I was feeling better, not so stiff, but today the stiffness is back full force.

TIA

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@wgr123 My falls were less frequent as I neared “Freedom from Repatha Day” (full detox after half life of drug counted).

I will say that it was very hard to sort out what Repatha caused and what was caused by something else. Also there was a psychological aspect to my detox. I led myself to expect full recovery with full detox. Was that part of my full recovery? Maybe. I had a huge reward also, thanks to the DMV. I got my license back. So expectation and big reward might be part of my recovery.

IMO the statistical study of exactly what causation is, like the Bradford-Hill criteria, is helpful. Makes you more certain, easier in mind, less anxious. When you know the cause for sure, as well as anyone can know it, you feel better about getting rid of the cause. You feel stronger and that may actually help your condition. Maybe?

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Hang in there!!❤️

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Profile picture for HomeAgainLA @llynch17056

No one can tell you the answer. My experience was that every statin, every dose caused intolerable pain. So, if you had pain on one you probably had pain on the other. And, sadly, will probably have pain on Repatha. The pain takes longer to show up on Repatha, for me, about 2 months. I thought I had finally found one I could take, but, when the pain came, it can hard. Just my experience. I wish you well. Unfortunately, doctors just want you to take it no matter what pain you are in. A lot of people take statins without a problem which makes it hard on those that have bad side effects. The doctors tend not to believe us, which is ridiculous. I’m not a whiny toddler, I am a 77 year old smart woman that wishes she could take them, it would be so easy if I could. Instead I have spent a decade having terrible life disrupting side effects as doctors keep trying different brands and different doses after which I spend months each time nursing myself back to health. I finally said “I quit” to which my doctor said “then I can’t help you.” A stunning statement to hear from your heart doctor. Actually, if he really cared, he would work with me on other things that might help and, at least, be sympathetic. On my own I got a base line Lipid Panel and started taking Beta-Sitosterol PlantSterols which are supposed to to lower my LP(a). So far no side effects. I will do another Lipid Panel in 6 months. I have to do something.

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@llynch17056 I'm replying to my own post: the Beta Sitosterol did not lower any numbers, neither did CoQ10 (CoQ10 gave me statin side effects anyway). I’m now on Tirzepatide. Six months. No side effects except I lost some weight. Will soon get tested to see if my numbers lowered.

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Profile picture for HomeAgainLA @llynch17056

That’s what I need but I don’t think it exists in Baton Rouge. I saw my internist today. Even though my total cholesterol is 265 when that number is divided by my HDL which is 91 I get a very low ratio which is super good. He said he wasn’t worried about my health because of my high HDL and my low ratio number. I did have a LPa run today, I’ll probably get the result tomorrow so I can see if the Beta-Sitosterol lowered that of not. The cardiologist was ruining my life. I’m not stressed about it anymore. I won’t be returning to that cardiologist. My internist said I was strong, not overweight, exercise daily, eat healthy and have a low ratio number. I’m good in spite of 265 total cholesterol.

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@llynch17056 replying to my own post: the Beta Sitosterol didn’t lower my numbers.

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