Repatha, side effects and what comes next?

Hi @tatiana987, and welcome to Mayo Clinic Connect. I absolutely feel your pain and am so, so sorry you are struggling with this. Figuring out side effects can be super difficult.

I didn’t connect pain to Repatha until the night after my 9th injection. Then, looking back it had been creeping up on me with every shot. I woke up in the middle of the night thinking I forgot to breathe, but who does that? The pain was in my front right side, higher than yours. I stopped. After some time another doctor encouraged me to try the drug again. I believe I took 2 or 3 shots and didn’t respond any better.

I actually walked through the process with a nurse from the drug company. I was never able to get ahold of her once I started recognizing the drug wasn’t working well for me. I also asked a NP at my cardiology clinic at the time (I am no longer there). She begrudgingly looked at her computer and told me there were no problems with Repatha. I say this only to encourage you to trust yourself with what you are experiencing. Please, please ask your prescribing provider about it. Regardless what you are told, trust yourself!

Mayo Clinic Cardiology has helped me get my LDL under control for the first time in my life, safely. You have options!

You say you aren’t sure some of the pain is attributed to Repatha. Do you notice a pattern? Have you thought about taking a break to see if your symptoms improve? Sorry, one last thought……have you had a chance to run this by your doctor?

I hope you come back here and report how you are doing. I am include @donlynn who created this discussion. Donlynn, do you have an update about using Repatha?

Thank-you. Your answer is very kind and understanding, Looks like we have had similar experiences. You asked whether I noticed a pattern. Yes. Now I do. After my first shot, I felt an odd euphoria, as if I hd taken a recreational drug. Since I’ve never really tried such drugs, this is how I imagine they must feel. After that, each shot was a bit different in terms of how I felt. After 3-4 shots where I had no idea what to expect, a pattern emerged. There were three days of « liver pain » and gradully I got better. Then 3 days of pain became 4, then a week and so on. On shot 16, I was in pain the whole 2 weeks and now I am 3 days late taking shot 17 and I am very sick. My neurologist had my driver’s license taken away, which is a disaster for me. He believes that I black out a lot and am a danger on the road. I have never blacked out in a car and have had no traffic accidents. The doctor’s opinion is all that counts to take a driver’s license, Hard to believe, but true in the state of Nevada. You “volunteer” to give up driving privileges or else. Seems fascist to me, and I hear of other people suffering this.
The truth is that, I have fainted a few times in the heat and from a standing position, and I have fallen many times. I have no diagnosis except from whatever Google and I can come up with. My cuurent guess about my problem is that it has multiple causes: 1. medications (a Beta blocker and Repatha and blood thinner and antihistamines and a lot of supplements) 2. Summer temperatures 3. Sugars and allergens 4. Maybe some autonomic dysfunction. In sum, I have the feeling that I am far too sick to take this medication. My medical care has been frightening horrible.

Thanks. I should say “liver” area pain.

You should know that Repatha stays in your body for quite a long time after a dose. Here's some info on this: https://www.drugs.com/medical-answers/long-repatha-side-effects-3551518/

So you might have side effects for as long as 2 months. Fingers crossed you're not having effects that long

Thank you. Useful info. I am not getting any help at all and some questionable info on this from Renown Reno where I seek medical help. I wish I had a video of my neurologist rolling his eyes at my saying I thought my condition plus his taking my driver’s license was life-threatening, given the summer temperatures. At our appointment, he was being shadowed by a medical student who also rolled his eyes. It was laughably awful.

Oh my! Thank you for this post! It describes my experience exactly. I have tried all the statins. They make ne very sick (diarrhea, brain fog, depression, zero energy…). So I tried Repatha. I really wanted it to work, too. I didn’t even look up typical side effects. Soon after I started it, I got raging diarrhea, cramps, depression, headaches, zero energy, overall malaise. I had to cancel a trip to visit my father because I was so sick. I never got to see him before he died. I feel exactly like you, in that the medications make me feel like I’m dying more than anything else. I’m not taking anymore.

I understand. My internist agreed with me to try OTC Beta Sitosterol which has shown promise in reducing LPa and cholesterol in general. I will be tested in a couple of months to see if it works, but my LPa was significantly down on my last testing but I had only been on it a short time when I tested so I don’t yet know if the Beta Sitosterol lowered it or now. I will post here after my next test.

I haven’t noticed any side effects, if there are any they are definable minor.

I took only one injection and 3 days later, I woke up with major congestion and nasal discharge along with flushing and the injection site bruised badly. I also had a back ache similar to the statin reaction. My cardiologist agreed that I can’t tolerate any of these meds, so I’m trying beta sistosterol and hoping for the best.

I am learning a lot on this blog. Thanks to all. I will now use the words and expressions that others use. I have taken 17 Repatha injections and then the back pain and some joint pain became too much and I quit. Repatha did lower LDL, but at a cost in side effects, Since quitting Repatha, these symptoms have gone away almost completely. I have no more back pain or random severe joint pain.

Other symptoms that I have may or may not be attributble to Repatha. I had several spells of light-headedness that sometimes ended in falls. Now that I am off Repatha, that is getting better and I am not sure why. Could somebody who understands medicine better than I please answer this question : if Repatha can be blamed for my light-headedness and fainting, what might be the mechanism of action? Could it be brain cells used to high LDL levels that with Repatha no longer have adequate fat to function right?

@llynch17056 Wow, lowering your LP(a) would be a wonderful thing. Hopefully, your LDL is something the plant sterol, Beta Sitosterol will help as well.

Have you seen this overview of “Supplements for cardiovascular Prevention”? I listened to it recently, Mayo Clinic Cardiology’s continuing medical education podcast series. You’ll need to scroll down to the June 3, 2025 episode (it’s a brief 10 minutes): https://cveducation.mayo.edu/store/pages/podcasts

I look forward to hearing how Beta Sitosterol works for your cholesterol and LP(a) after you test again.