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