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Profile picture for anyasmits @anyasmits

It stays in your system for a few days but it affects the liver blocking the making of PCSK9 witch increases de LDL levels in your blood. After 6 months your liver stops doing that. I'm concerned that that proces itself is responsable for the side effects. Not Leqvio itself. I understand spasms and musclepain can last a long time. This could be due to a lack of PCSK9.

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Replies to "It stays in your system for a few days but it affects the liver blocking the..."

@anyasmits I have read all 200+ comments on Connect that mention Leqvio, and it seems like most people have had auspicious results with it. I seem to be an outlier. The one person whose experience most matches mine is @nancym7 , who is posting in this thread.

I had my first injection five and a half weeks ago. I was put on it because I am statin-intolerant, and a combo of Nexletol + Zetia didn't lower my LDL to where the docs wanted it. Then I was on Repatha for eight injections. I hated it because the side effects lasted so long.

For me, side effects manifest as almost debilitating muscle stiffness, where I can barely move. My cardiologist, when we talked about going on Leqvio, said she had 20 patients on it; for one, it wasn't effective, but no one had side effects.

I noticed the return of the side effects after about 12 days; since then they have gotten worse. There have been a couple of days where I thought I was getting better, but right now, I feel as bad as I ever have (excepting post-open heart surgery four years ago).

I think you may be on to something, that it is the lack of PCSK9 that causes the side effects, but I can't find any reliable information on that. My cardiologist has said that while she has not seen this side effect, that it is possible.

Now there's a new pill form of PCSK9 inhibitor called Lipfendra. I do not know how I will end up treating my high LDL; if my cardiologist recommended that drug, I might consider it since it's in pill form, idk. But I for sure am not going to take any more injectables.