Anyone stopped taking Repatha after trying?

@lkay00
Same here…I was on stains for many years but the impact on my muscles was just too much. I tried Repatha and started having terrible pain in my hips and thighs such that I could not get myself out of a chair without really using my arms, or step up to my SUV or walk stairs without tremendous pain. I tried for several injections before my last cath—tried again for three injections and said no more! I will be starting Leqvio as soon as insurance approves. Good luck! Don’t believe them if you are told that this is a rare side effect…I think it is much more common now that they have more people taking it.

Repatha has destroyed my life as I know it. I was on it for four years and did not realize it was the drug. I thought that I was aging fast. I have permanent loss of strength and mobility in my hands, inflammation all over my body and leaking veins in my legs which causes edema in my legs and stomach. These are the side effects that I am still dealing with after being off the drug for 1 year and 10 months. My rheumatologist told me that she sees this in the injectable cholesterol meds all of the time. Some of the symptoms that finally have decreased are dragging left leg, falling and inability to get up by myself, severe inflammation to the point of walking like a penguin, inability to step up steps or bend, loss of hair, extreme fatigue, severe abdominal, leg and foot inflammation and edema, loss of joint mobility, intermittent speeding heart, pain, constant UTI's with some being very rare(haven't had one since off the meds), tendon snapping for no reason and weight gain. Repatha was the only drug that I was using, so there is no other drug involved in these symptoms. I do no have Rheumatoid arthritis or any other of the related diseases. I can no longer do so many of the things that I used to do. I was very active before taking this drug and had the ability of someone in their 40's even though I am in my 60's. I am gradually improving but my Rheumatologist said that it will take years to recover from the damage from this drug.

This is scary info. I have had back issues much of my life, but they have gotten much more severe in the last 8 - 9 months. I thought it was just getting "another year older" that was the problem, but my sister commented recently that I was not struggling like this last fall when we went on a trip together. I looked back at the start date of my Repatha and it was Jan 2026. Coincidence? Guess I'll discuss that w/my doc when I go back in October - if I can wait that long.

@rhondaj I've been taking Repatha Sureclik since Feb '26....so I've been concerned about the side effects. I have Familial Cholesterolemia with not many choices in dealing with the high LDL. Started statins years ago, then stopped because of the leg aches and the beginning of diabetes. When I stopped the statins, my A1C went back to normal. My CABGX3 lasted for 11 years, now all closed up. At 70 years young, I am living off of my Lima artery as I am mostly closed up. My heart is running on 2 Horsepower instead of 6 Horsepower. I am considered a CHIP, (Chronic High Risk Patient) I have one option to try: Angioplasty via Catheterization, maybe 85% chance of it working. Don't know if I want to risk a third Cath this year.
So I'm living on a wing and a prayer, praying that the healing technology that has been withheld from the masses will be released and we can stop being human guinea pigs with all of these medications. We have been lied to about everything in this world. God, help us all.

I took Repatha successfully instead of statins (I had joint and muscle issues with the 3 statins I tried). It took my LDL from 95 to 17 without and diet changes. I had some stomach discomfort shortly after my first injection and for next several hours with first two doses. I continued without noticeable side effects for the next 6 months. Then, about 36 hours following a dose, I had flu-like body aches and chills (without fever), and extreme fatigue. I rested (I was actually on a cruise when it happened) for about a day and began to pull out of it. I noted roughness, acne-like breakout on my forehead. It didn’t itch or hurt, so I assumed it was from wearing a ballcap the previous several days. Then 14 days later at my NEXT dose, again about 30 hours after dose, I got extreme fatigue, body aches, just like before. This time I suspected the Repatha could be the cause. I rested two days solid and a rash developed over my entire body, much worse than before. I ended up in the ER getting IV steroid, and IV benedryl. 4 days after ER, I started oral steroids for 14 days along with benedryl, famotadine (it has H2 blocking abilities evidently) and switched to cetaphil soap and baby shampoo. The rash never itched much, but felt like needles sticking me from about day 3-7. The rash lasted over a month (I am on day 28 after that last dose of repatha today and still have some bumps from the rash, especially on torso and legs.). I also generally feel like my body is still dealing with the hypersensitivity response. So for those that take repatha, be aware of this potential reaction. If I had known to recognize it the first time, there would not have been a second time. The docs generally say I am lucky I didn’t go into respiratory failure or worse. If you google repatha rash, you will see how bad it can be.

My cardiologist is planning to put me next on something I have to get at a clinic once every 6 months. I will research the heck out of that before I agree to try it. My LDL isn’t that bad, but they are trying to ‘reverse’ artery clogs which were 40% in 2023. I have a CT scan in Oct to see if all this statin and repatha taking has actually made any difference, or not.

I wish you all long term success on whatever treatment you are using. I think we need to have open dialogue like this so more people know what to watch out for, for real.

@behill01 I'm sorry that happened to you; I feel like we are all guinea pigs in this current world, God help us all.

@hopefulme3 Omg I have been having an issue with a corner of my eye filling up, like the duct is blocked.