Hi Donlynn,
Yes, I had to stop. I had debilitating side effects that came on slowly over the years. It took a while to figure out that it was Repatha. Unfortunately, I have long term damage now.
My side effects were constant, unexplained UTI's- some of them were a rare strain, back pain, leg and hip pain (I would walk like a penguin for the first 15-20 minutes when I got up from bed and limp after that for the rest of the day), severe inflammation to the point of being unable to walk properly, left foot dragging, severe lack of flexibility in hips and legs, tripping all of the time, intermittent and severe edema in the abdominal, groin and legs, tendon in foot snapping for no reason at all, inability to step up, bend down or get up off of the floor, and severe exhaustion. I was healthy and very active before getting on this drug. I was on the drug for four years. The first two years they had me on a statin as well...the last two years I was only on Repatha, so there was no other drug involved. I still cannot do yoga, have difficulty doing simple things like typing, picking up a glass, opening a can of tuna, dressing in anything with zippers or buttons, preparing meals, cleaning the house and it has impaired my ability to work full time. I fell about a week after the doctor agreed that I should go off the drug. I could not use either hand for months, and the rest of my body was swollen. After 6 months of PT, they determined something else was going on. After being off the drug for 11 months or so, many of the side effects have dissipated....unfortunately, I have lost some of the use of my right hand(Rheumatologist confirmed that I do not have Rheumatoid arthritis, but that it is a long term side effect from the drug, symptoms are the same though) and I still have intermittent edema in my legs, stomach and groin area that can be very painful when it flares. I have to be very strict with my diet, swim and I am taking supplements to help with the inflammation. If I vary at all, the symptoms come back with a vengeance. Sometimes, I have flare ups for no reason at all. Something as simple as working at my desk or driving for four hours can cause a flare up for days or weeks. I flew to Texas and it took two months to be somewhat normal again. The doctors have run every test you can think of to eliminate other causes. I have two more tests to go regarding the edema, but at this point, it is leaning towards Repatha damage for my remaining symptoms, and the inability to use my dominant hand (and Rheumatoid like symptoms throughout my body) have been confirmed to be caused by the Repatha.