Started Repatha - Side Effects

Suspicious that Repatha is causes the same joint and muscle pain I had with statins. Wonder drug for reducing ldl. Mine reduced to 17. I’ve had to stop it for awhile to see if the muscle and joint pain goes away.

It took quite a while after I quit Repatha to start to recover. I thought it was going to be permanent. I also lost muscle strength. I have practiced yoga going on 12 years and I couldn’t do it. I didn’t have the strength and it hurt so much in my joints. 2-3 months to recover, but I’m strong again.

I read that Repatha might actually improve any blockage rather than just prevent it from getting worse like stations do.

That is my hope as well. I’ve not had a repeat calcium scan yet, but my internist has shared that 10 of her patients are showing improvements on their scans.

It scares me to take a medication to cover side effects of another medication, anyway, even if the Doan’s relieved my severe low back pain, I still had severe joint and muscle pain all over , muscle waste, fatigue and loss of balance. I’m getting it all back since I’ve been off of Repatha. I wouldn’t stop a medication and continue an unhealthy lifestyle, but I am living a healthy lifestyle, I feel good and if I die of a heart attack at least I won’t die bed ridden by Repatha. Not everyone has the side effects that I have. If I didn’t have the side effects I would stay on it. But, my side effects were too severe, so I’m opting for organic, fresh Whole Foods, keeping my weight down, doing yoga, walking 8,000 and more steps a day, staying very active and sleeping. I actually love my lifestyle. It’s not for everyone.

You are a good example. I also refuse to take a pill that will require another pill to correct the effects it has on my body. There are trade offs. The current pill I take, lowers my blood pressure, makes me dizzy so I use a cane, annoying brain fog, diaherra and my hair has thinned. On the upside, I can take deep breaths, sleep without a pillow, yawn again, no fainting when I stand up quickly, make dinner without sitting down and have energy to walk 180-250 minutes a week. The cardio docs want me to change my meds and the meds are loaded with more side effects. So is it quality of life or quantiy of life?

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!

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!