Started Repatha - Side Effects

I had a known medication expert tell me that while some side effects are more common, with strong medications, there is no predicting. Too bad he is retired now.

I'm returning to this thread with a question.

For anyone who's had bad side effects from Repatha and went off it, did you continue to have side effects equally as bad during the whole time it took to clear your system? 60–90 says is the half life to be out of your system, per Repatha's site, drugs.com and other sources.

I've been off it a little over two months, and my debilitating back muscle stiffness and pain is still just as bad today, though some days it is not so bad. Had an appt with my PCP today and he is skeptical that my musculoskeletal problems are caused by the Repatha; says since I've been off it so long that it should be mostly cleared and side effects not as bad. (Yet all testing for anything else, e.g., autoimmune diseases, etc) has been negative.

TIA for any info.

@wgr123 my back pain is better, but I am not back to pre-Repatha, I’m starting to think I will always have some permanent back pain from Repatha. I will never take it again

@wgr123 Yes, I continued to have pain and muscle cramps for several months. My PSP was also skeptical. I've been off Repatha for about 5 months now and I'm no longer having symptoms. I will never take Repatha again.

@geeinflorida Thank you for the response. I have boxes of it in my fridge still. I have not taken it since mid-November. I told my PCP that in the absence of any diagnosis about my muscle stiffness and pain, I will never take it again.

It's maddening, everyone being so certain about how this injectable drug must surely affect everyone the same. And in the grand scheme of things, Repatha is a fairly new drug.

My PCP keeps saying he thinks I have fibromyalgia. I told him I did not feel this way during the months I was off statins and on Nexletol and Zetia (which didn't lower my LDL enough), only after I started Repatha. I wish I had never heard of it; I wish I had never taken it. I hate that its half-life is so long.

I'm sorry for sounding so bitter. Feeling bad will do that to you, I guess.

@llynch17056 Thanks for the reply. I hope you can get to feeling better.

@wgr123 I tell people that when they list possible side effects, that’s what most people get, but when they list SERIOUS side effects that’s what some people get. I wish doctors would realize that SERIOUS side effects are REAL and not blow them off just or call it something else just because a lot of their patients don’t get the severe side effects. I’m so over doctors pushing these statins and Repatha on me. I won’t ever use them again. If I die a few years sooner, at least I died feeling good and with energy and quality of life.

@wgr123 thank you!! I feel good. I’m completely off of those drugs. I’m very active and live a dynamic happy life. Those drugs made me so sick. I now only take thyroid meds. That’s it. But, I eat very healthy, do yoga and get 6,000-10,000 steps a day. I’m an active volunteer in a non-profit litter removal group so I get a lot of exercise.

@wgr123 I’m still amazed that healthcare doesn’t believe these symptoms among some people on new drugs. I was told that the “drug rep said those weren’t symptoms “. Really!!!

I've never been someone who rails against Big Pharma. I had open heart surgery in 2022, surgery to repair an aortic aneurysm that surely would have killed me if it had gone undiagnosed. I don't take as much now, but I've taken as many as seven prescriptions at one time (TMI alert: I also had a prostate issue), which was mortifying.

So I know the good that medicine can do (Cap'n Obvious here). And I know from this site alone that people have fantastic results from Repatha. What I wouldn't give to be one of them. Or to be able to take statins. I had Lipitor prescriptions that I barely paid anything for (not that cost is the determinant in this, really).

I just resent what feels like gaslighting by my now-previous cardiologist who flat-out said that Repatha doesn't cause muscle problems (it's in their own commercials, for pete's sake!), that my side effects must be the result of something else.

And while my Friday convo with my PCP wasn't contentious, it did feel like going around in circles, with him insisting that at 70+ days in, I should not being having the terrible side effects I'm still having. Despite all other testing being negative.

I did not feel like this (bad) during the time I was off statins and before I started Repatha. I was able to do PT; I can't even do those exercises right now. I was able to do yardwork, getting down on my hands and knees.

I'm just repeating myself; I should stop posting about this now. Thank you for indulging me.