Anyone stopped taking Repatha after trying?

Hi @kyiaj and welcome to Mayo Clinic Connect! You have found a good place to share experiences with others.

As you wait for @brad331 and @tazzm2025 understanding a bit more about your experience may help others know how to comment.

What is your experience with Raptha?

Repatha was horribly negative to my GI system, both upper and lower. Liver releasing bile into my intestines, put on medications for all side effect issues that just kept getting more horrid. Was taking medicine to counteract the side effects of Repatha. Issues still existed, d/c with internist’s approval.

Fast forward….put on Nexletol, Zetia, and Pravastatin combo. Slowly got sick, cognition issues, GI issues again, URI issues that would not resolve, horrible exhaustion. I took myself off of everything when the URI’s stayed unbearable for weeks. Feeling much improved after stopping all cholesterol med’s. Going back to lipids specialist to confess feeling great off of med’s.

Really feel like I need some lipid interventions, but laying around feeling sick 24/7 is not the solution. Cholesterol issues are hereditary.

If I remember correctly you took Repatha for 4 months, @scpatient24. I had taken 9 injections before making a connection.

Like you I tried other treatments for genetically high cholesterol. It wasn’t until a more integrative approach that I found some relief. I remember saying Zetia is “from the devil”. This is probably only funny to people who know me well because that is something I don’t say, and I am far from a dramatic personality. I agree with you, the cognitive issues are real! Well, I eventually tried Zetia again (after other treatment steps). Now it is added to a statin I had previously abandoned and Inclisiran. My numbers have never been better.

You mention options of lipid interventions. What are you thinking of? When do you back to your lipid specialist, and do they collaborate with your other doctor(s) (GI, PCP)?

I took Atorvastatin for 8 months and had similar problems as described in this Repatha post. Have been off it for 3 months and am finally beginning to feel human again. I can sleep, have no more nightmares and my ability to remember things has returned. I can walk without being wiped out, the nasal symptoms have disappeared - as have the stomach issues and the chest (breathing) problems. The muscle problems of the wrists and shoulders, however, persist. Remember, this all happened when I was on a statin.
When I stopped the statin, the cardiologist prescribed Repatha. Given the hell I went through in the 8 months of being on the statin, I was not overly delighted to jump into another drug - so I did not start on Repatha. Tomorrow, however, is my regular appointment with said cardiologist - who is a very good doctor - but can't really understand my fear of taking another drug that just MAY cause the same symptoms that may be lasting. I suppose it has become psychological for me. I'm scared of even TRYING the drug, for fear of having the same reactions as I had to the statin – and those reactions perhaps becoming permanent disabilities. After reading all the comments here in this column, that fear has more reality attached than before. Thank you to all wrote and took the time to describe their experiences. It has been a huge help in deciding that, in my case, I should ask for an alternative rather than pursuing the Repatha route.

@valleylil Just started Repatha to help with high (320) LP (a). All good so far. Not many other options until new drugs are available

I tried Repatha with great success BUT! I noticed it affects my mood. I went off and it took quite a while to get back to
Feeling less anxious and tearful.
Well of course my husband thought it was all in my mind! So after several months of feeling a lot better I went back on. Sooooo after 3 months on I started feeling the same effects on my mood.
I’m Stopping and never going back on. I feel just miserable and anxious. It’s the Repatha!
I’m done, and that’s ok!

@vmkrueger I'm glad you feel better second option ask questions always. I had a bad experience with one medication my stomach was horrible. I stop feel great. Blessings

My first Repatha injection was on February 27 2026. 2 injections in March and the last one April 10th. Due to something unusual I started backtracking the journal I keep of food while I try to find out what I am still allergic to and what I can not tolerate or am sensitive to because of problems before I started Repatha. While doing I noticed a notation exactly 3 days after every injection of full blown diarrhea and then of course the next day being too tired to do anything. I started to think about future arrangements in my schedule being around the injection sights and having to plan on NOT BEING ABLE TO DO ANYTHING ON THE 3RD AND 4TH DAY AFTER INJECTIONS. Then I started to notice other items I wrote in the diary and started realizing that I have other problems with my neck and shoulders I never noticed before as well as other symptoms. I live in South Carolina so don't know of a clinic near me that can handle something like this but have every intention of not taking my coming injection of REPATHA. I honestly never thought the side effects they mentioned were something I had to worry about and now wonder if I just have to change my diet. My next step is to contact my Doctor who put me on this and tell him I am not taking it now.

@nottohappy It's great that you have a detailed journal to track these effects. Please do let your doctor know what you have experienced, and that you will be discontinuing the injections. As you can read in this thread, there are other options to try.

I started experiencing left leg and lower back pain after my second injection similar to sciatica per the Internal Medicine doctors. They did not think this was related to Repatha and was more than likely sciatica. They prescribed pain killers, ointments, lidocaine patches and physical therapy. Upon a physical examination by the physical therapist, his assessment was that there was no lumbar involvement. I started physical therapy and it only made the pain worse so had to stop.
I had another visit with the cardiologist and his recommendation was to continue taking Repatha for 2-3 more doses and if the pain continued he suggested a drug holiday. Unfortunately, the pain continued following each injection worsening after 2 days. My Cardiologist still isn’t convinced that my pain is related to the Repatha injections but just a coincidence that the pain developed soon after starting Repatha. I now have an MRI scheduled in about 3 weeks to determine what the cause of my pain is.
To me what’s disconcerting are the conflicting diagnoses. My thought is that even though I may have sciatica or other related condition, is it possible the Repatha given its side effects of muscular pain, could be making it worse? Lately, I’ve had 2 days of the worst pain probably caused by picking up a couple heavy items and am beside myself. I have started the drug holiday as of today but takes 3 months to have the medication out of the system. I’m waiting anxiously for the MRI for some clarity.