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Started Repatha - Side Effects

Heart & Blood Health | Last Active: 8 hours ago | Replies (130)

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@jlharsh

I initially used Repatha starting 1/2018. The night after taking my 9th injection I abruptly woke in the middle of the night thinking I had forgotten to breathe. It was a pain in my right side behind the bottom ribs. Of course, you don’t just forget to breathe. That is when I made the connection to Repatha and the fact that my symptoms had gotten gradually worse with each shot. I felt crazy getting subpar results, feeling glad the drug was not working. I could discontinue the drug because it didn’t work.

Two things I think of when you ask about possible misleading information in drug trials….While I cannot speak to the particular situation I do give pause to the possibility of what we are presented is not the entire picture. 1) I took my first injection from home with a Repatha nurse on the phone. I reacted when the shot hit my leg. I had myself psyched up to take the shot, everywhere hearing it doesn’t hurt going in the body. Well, duh! It is a needle and it does go in your body. I felt something, unexpected. The nurse asked if I had pain at the injection site and I said, no just the feeling of a needle going in my body. A week or so later I got a call from the doc’s office asking how the pain was at my injection site. What pain? I said I didn’t have pain. This may seem trivial, but then we see commercials that make it clear the biggest side effect is pain at the injection site. I just wonder if it could be important to inflate this particular number. Maybe this is a stretch, but….. 2) I have a history of side effects and drugs not working. A Repatha nurse did come to my home and watch me take an injection. So, I made sure she saw another. I even drove an hour, met her at a Panera. (Hope all the goodies she bought on her expense account were enjoyed by someone). We went in the bathroom there and and she watched me take an injection. She had become my BFF and we had talked several times via phone this entire time as she encouraged me along. Well, the shot didn’t work well, turns out it wasn’t me taking it wrong. I didn’t feel good. I never heard from her again even after several of my attempts to initiate.

I don’t talk a lot about my struggles. Rather I choose to focus on where I go from where I’m at. However, I do hope this information helps you as you sort through what your own path looks like. I know several people successfully taking Repatha. My experience was not that. Good luck to you!

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Replies to "I initially used Repatha starting 1/2018. The night after taking my 9th injection I abruptly woke..."

Thank you SO much for your thoughtful reply. My doctor acts like I’m faking the side effects, or, that I am stubborn. But, I have severe side effects and if Repatha, or statins, for that matter, would work for me I would do it. There is heart disease in my family. I don’t appreciate this attitude from my doctor. I’m seriously thinking about changing. I do not like taking pills. I don’t trust Big Pharma. But, I do take two other meds that help me and have no side effects (except that I recently found out that the long term use of one of my meds probably caused my osteoporosis). I’m not taking anything for that, either. You get meds then they cause side effects that cause you to take other meds and on and on. I am trying to see a DO to see what whole body systems of good care can do for all of this.

Thank you for sharing your experience. What did you decide to do after this experience? Did you go to another injectable?