How long do side effects for Leqvio/Incliseran last?

@71young
Yes my last injection was the one in October 2024. I have not replaced it. I am still having pain, especially sciatic, just not as bad. Obviously with constant pain and lack of sleep, I'm also not about to take any more chances. I need to fully recover before I consider my next step.

@nancym7 Hi. Can you share some specifics about the 1000mg B12 you took?

I haven't been on the boards in a while. I was deemed statin-intolerant, then put on Repatha; the side effects were just as bad but seemed worse because it stayed in my system for so long. I just had my first Leqvio injection two weeks ago. My cardiologist says she has 20 patients on it and no one has had bad side effects, and at the infusion center, they said the only complaint they hear is about injection site pain. The injection was easy-peasy for me.

But the past two days, it seems the adverse side effects I had on statins and Repatha have come back in full force. For me, it's incredible all-over stiffness but more noticeable in my back, neck and shoulders.

I saw a physiatrist a few week ago, before I had the Leqvio injection, because my PCP kept saying he thought I had fibromyalgia. The physiatrist says I don't. He recommended B12, and I bought 5000 mcg tablets at Costco. You said you take 1000 mg, not mcg, right? I've been taking it several weeks now.

All I know now is how bad I feel, and I'm worried that it's the Leqvio. Thanks in advance.

@wgr123 Hi, First of all I am taking Thorne vitamin B12 in a 1 mg capsule. (Previously I was taking Nature Made B12, for years because of a childhood deficiency that I no longer had, but was concerned that it might return. )Within a day with the Thorne B12 I noticed a difference; within 3 days my intense sciatic pain was gone. I couldn't believe it, but that’s what happened and continues to be good. I still have some gluteal and other pain/discomfort, but the electric shock pain is gone. I had pain in the beginning with the Leqvio, but I honestly thought it was my arthritis simply spreading to my other joints. I am also still dealing with back pain, wrist pain etc but it’s now something I had before and can deal with. I am also continuing exercises from Physical Therapy. It's been a rough few years and personally I can say it was side effects from the Leqvio. It " attacked" all the areas that I have had some issues with, but ramped up the pain to intolerable. And I also was unable to sleep because of the pain and leg cramps.(I am 80 years old.) It did lower my LDL significantly but at a great cost for me. I believe that I have a long way yet to go. I wish you well.

Thank you for the response. I may try the Thorne B12. I bought the 5,000 mcg tablets (300) at Costco; that converts to 5mg. I can't say I've noticed any difference since taking it.

"It "attacked" all the areas that I have had some issues with, but ramped up the pain to intolerable." I think that is what happened to me also, with statins and then Repatha. My "old" myofascial restrictions were just hammered. And I was so stiff that I could barely move, which didn't help things.

The physiatrist recommended I take up yoga. I'd tried it in the past, in class settings, which didn't work for me because I needed more individual instruction. I have seen someone for privates twice now, and I planned to do continue that weekly (and doing it at home the other days). The first time was pre-Leqvio, and it was challenging but I wasn't sore the next day or later. This week, it was more challenging, and the day after and yesterday, the old statin/Repatha stiffness side effects had returned.

I was worried because I'm running out of options for treating my LDL (and also have elevated lipo(a). I messaged my cardiologist in MyChart, and she said she had not heard of that side effect, but that medication could cause anything at any time (thankfully, she didn't try to gaslight me, as my former cardiologist did, by insisting that Repatha didn't cause musculoskeletal problems), to take ibuprofen and lay off yoga to see if it resolved.

I actually feel better today (but far from 100%, which I haven't felt in a long time), so I'm hoping it was the exertion from yoga, which I know is gentle, but using muscles in ways they haven't been accustomed to working. I really want to be able to tolerate Leqvio (if wishes were horses, lol).

Again, thank you for your reply, and good luck to you.

I have had three injections of inclisarin and no side effects with any of them.

I have been on Leqvio for 3 years and have had no side effects, unlike my experience with many of the statins.

@mikena Hi, I wanted to let you know that my bad side effects came after my fourth injection. They came as a total surprise; I had some issues with the other injections that I simply attributed to being almost 80 with some arthritis. Hopefully you won't have any side effects after your next injection.

@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.

@wgr123
I had my first Leqvio injection two weeks ago and had no problems for the first week. I’m now getting primarily left leg numbness but I’m walking fine, just feels weird. Also intermittent headaches and shoulder pain. NSAIDS help which makes me think that it’s an inflammatory side effect. Worse than statins.
I’m done with Leqvio 🥹

@horseypants I'm sorry you're going through this. Thursday will be 10 weeks since my first injection of Leqvio, and my side effects are at their worst yet. Debilitating stiffness that makes any movement difficult. I'm 67 and left the city where I live to come to my mother's two weeks ago because I can barely get around. It's something when I find myself envying my 85-year-old mother's mobility.

I had labs done a couple weeks ago, all negative: no muscle damage, liver function OK. My cardiologist said she still hoped the side effects would dissipate over time. As I said, as of today they have not; they've gotten worse over time.

I first noticed side effects about 12 days after the injection. I can gauge the severity of the side effects from what I'm able to do at the gym. I've gone from being able to do an hour-plus of cardio (mix of treadmill, upright bike, recumbent stepper, arm bike, etc)—and this after the onset of side effects—to now only being able to do very minor stretching and limited cardio; today I did 15 minutes on the arm bike.

It is so frustrating. I wish I understood the physiological reason (that is, if anyone does) why PCSK-9 inhibitors cause the side effects they do in people like me who end up not being able to tolerate them. Whatever it is, I think I am just hyper-sensitive to any cholesterol meds. Can't take statins: After 18 months on 80 mg of Lipitor I ended up at an urgent care; after three weeks on Crestor I messaged my PCP in MyChart that I thought I had MS. I thought Repatha was the worst until Leqvio.

I hate the idea that I could have months more of this. No more Leqvio injections, and I told my PCP the other day I am never taking any more injectables of cholesterol-lowering meds.

He said I just have to let it work its course through my body, then in several months look at other meds. My cardiologist mentioned Lipfrendra, the new PCSK9 pill; I guess we'll cross that bridge when it comes time. Since it's a pill, I might consider it, but for now, I am not taking any more cholesterol-lowering drugs until I am recovered. Quality of life is worth a whole lot. I never, ever expected to feel this bad.

Sorry to go on about it. I hope you feel better soon.