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Repatha, side effects and what comes next?

Heart & Blood Health | Last Active: 9 hours ago | Replies (103)

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Thank you to all who shared their side effects. I have familial hypercholesterolemia. I inherited it from my father's side of the family. I was raised in an environment where it was inconvenient for you to be sick. You were supposed to tough it out and not bother anyone. Statins did not work so I was Rxed Repatha. My first try was for 3 months in 2023 but I had diarrhea interfered with my job and didn't remit until I stopped taking it. My second try came a year later until I gave up in August of this year. I had diarrhea again but it stopped and turned into constipation so that was progress I guess. I wish I had read your stories sooner. I felt like I was the one failing to adjust when other problems occurred. I reported that the muscle fatigue and joint pain was keeping me from walking. I felt like I had the flu with night sweats immediately after each dose. I had sinus infections, UTI, and increased asthma symptoms. I was gaining weight. I tried spacing out the doses. My insurance dropped payment at one point and I noticed that I felt better without Repatha in my system but I started back up. Then I had severe back and shoulder pain so I stopped completely. Now I can see that symptoms I attributed to aging or other things were also probably Repatha. I have been off of it for 2 and a half months. Somethings have improved but the fatigue, muscle weakness, joint and back pain and increased asthma symptoms have not. Today I am going to see another specialist. It makes me wonder how many other people are out their trying to be "good patients" and are not speaking up.

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Replies to "Thank you to all who shared their side effects. I have familial hypercholesterolemia. I inherited it..."

@dslaboda
Yes, I was never a "complainer" as well. Unfortunately, I first thought that I was aging fast... which was not the case.
It has been a year now, and I am still suffering from the long term damage that Repatha caused. I do have to say that I am gradually getting better. It was so slow and insidious that it took some time for me to figure out that it was the Repatha causing all of my debilitations. My Rheumatologist has confirmed that I have long term damage from Repatha. She said it could take years for my body to recover.
Don't be hard on yourself, because I felt no improvement when I was at the 2 and a half month point either.