Joint Pain with Repatha

Posted by overthisnonsense @overthisnonsense, 2 days ago

First, I will say that Repatha lowered my cholesterol about 66%. That was in a very short time - about 6 weeks after 3 doses.

However…

Not long after starting Repatha in August of 2023 I started having some serious issues with my right knee. I had no trauma to my knee, but it swelled up and was extremely painful. I went to my doctor limping pretty badly and got an injection in my knee to get it to calm down. It eventually helped with the swelling, but is still sore to this day.

After that, my right hand (dominant hand, of course) swelled up and I had quite a bit of difficulty moving my fingers. It was like they would “catch” as I moved them. Again, very painful. I had some blood tests for RA markers but those came back negative. X-rays showed nothing.

I got in to see an orthopedic/sports med doctor and he looked my hand over and went over my films. He was stumped and his only conclusion was it had to be a Repatha side effect.

I contacted my cardiologist and told her what was going on and I stopped the Repatha around 1/1/24 and went back on Crestor. My hand is still swollen to this day, and sometimes it still catches when I move my fingers or grab something.

Now, my left knee is having the same issues. A few months back it swelled up and felt like my knee was on fire in the tissues inside. I could barely walk for a week and was still difficult for a few more weeks. It was also X-rayed and given an injection. That did nothing to calm it down so I was chair-ridden for quite a while, doing as much as I could tolerate.

It mostly calmed down but still had lingering pain - just like my left knee. It has started to flare up again and of course this is happening just as I am going backpacking around Europe next month. I do have an appointment with another orthopedic at a local research hospital that is, like the Mayo, also one of the top facilities in the nation.

I hope to finally get some answers. I never had ANY issues or trauma to cause this and I am feeling pretty convinced it was Repatha that is causing this. It sucks and is really affecting my quality of life.

I really wish I had not taken Repatha.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

My son in law had what turned out to be a severe sepsis and an infection in one knee. He has been off work for seven months and will have a knee replacement so that he can go to work again as an electrician foreman. If your knee is still sore, I would think it was damaged and may need arthroscopic cleaning or even a joint replacement, although it could also just be a damaged ligament/tendon....all to be determined by a competent authority using imaging techniques.

Who knows, though, maybe it was the drug.

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@celia16 No MRI yet (long story but let’s say it’s due to lousy healthcare system that I am leaving). Changing to this new system at a real hospital I am positive they will be looking at the problem more seriously.

Here in this country you have to be your own advocate and fight for your care since it seems to be mainly about profits and not taking care of people. If you don’t like your treatment it’s up to you to make a change and that’s what I am doing.

My experience has been in the middle of the country you get stuck with more traditional Westrrn medicine. I lived in the Rocky Mountains and Pacific NW and had much better doctors and care and are more open to new thinking and treatments. I didn’t HAVE the issues with care I have had here. That’s the reason I am now using a research hospital and it’s doctors.

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