Can LEQVIO side effects mimic an RA flare?

Posted by junieb1 @junieb1, Jun 22 4:36pm

Last September I started having joint pain and more fatigue than usual. I have over 30 years dealing with RA so I thought I was having a flare. By Thanksgiving I was having trouble getting out of a chair, I couldn't use my hands, and my joints ached all over. I love Christmas and have never missed putting up a tree but I couldn't do anything, and quite frankly I felt so bad that I didn't care if anything got done or not. My husband did the cooking, cleaning, and even put up a tree. Wish I could have shown more joy.

Things continued to get worse with burning sensations on top of my feet and the tops of my hands. I had aching and burning in my upper arms, up the sides of my hands, and in my shoulders. I wear hand braces sometimes because my hands hurt so badly that I feel like I need to protect them. I had to buy a seat for the shower because I couldn't stand long enough to take a shower. I have to wear clothes that can be pulled on, like elastic band pants and pull-on tops. No bras and nothing that has to be buttoned, snapped, or hooked. I can't write and I have a really hard time typing or holding things, like a book or a plate. I don't know if it is related but I sometimes get small blistery sores on various areas of my body. They go away in a few days and they don't itch.

It wasn't until April that I remembered that last September my cardiologist put me on LEQVIO and that I might possibly be having a reaction. It had never entered my mind because even though the statins my doc had tried caused tremendous muscle pain in my thighs, I normally tolerate drugs pretty well and my doc said all of his patients have tolerated LEQVIO very well. However, a brief online search led me to patients who had symptoms very similar to mine. In addition, my husband mentioned what I was going through to his therapist and she said the same thing happened to her. And a nurse I see said her mother had a similar experience as well.

Sometimes the symptoms ease up a bit - like today I took a shower and stood for a bit in the shower and I can use my hands to type this note. But so far, over the past 8 months I have gotten my hopes up for nothing as the symptoms always come back within a few days. This is not RA behavior. I am due my second injection of LEQVIO this month but if this truly is an adverse reaction there is no way I would put myself through this again. It has been 8 months of hell.

I guess I am here to try and find out what is wrong with me. My doctors are stumped. Things I am pondering:
1. Have others taking LEQVIO had similar symptoms?
2. Could my RA be exhibiting in an unusual way? (my tests are good)
3. Or could I possibly have some other undiagnosed condition?

Hoping to find answers or avenues to explore.

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junieb1,
Leqvio, can cause inflammation of the joints and is sometimes mistaken for an RA flare.
The inflammation causes further damage to the joints.
There are no "known" drug conflicts with Leqvio, but it is new enough for there to be "unknown" interactions.
I'd want to stop the medication to see if it is making your life so difficult.
Cheers to your husband, meanwhile.
There are cardiologist wanting me to take Leqvio since I couldn't tolerate Repatha, so I've been reading about it. We may have to wait for Crispr https://newsroom.clevelandclinic.org/2025/11/08/cleveland-clinic-first-in-human-trial-of-crispr-gene-editing-therapy-shown-to-safely-lower-cholesterol-and-triglycerides

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That sounds very promising! May I ask where you got the info that LEQVIO can be mistaken for an RA flare? I have tried to find information online and I have not been able to find much. Maybe just the fact that it can cause joint pain is enough to confuse it with RA. Thank you!

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