I am currently trialing off Repatha. I started the twice-weekly injection Aug. 4 and took the last one Nov. 11. I believe the side effects for me—ultimately, debilitating muscle stiffness being the worst of it—started mid-October, around the sixth injection.

At first, I didn't attribute the symptoms to Repatha; I thought I was tolerating it OK. But when the worst stiffness kicked in, where I could barely walk, it was like the symptoms I had when I was deemed statin-intolerant on Lipitor (80 mg) and then Crestor. I was then on Nexletol and Zetia for three months, but my LDL was nowhere near where they wanted it, so started Repatha.

I wish I had never taken it. Unlike statins, Repatha has a long half life. Tomorrow will be five weeks off it, and I am still experiencing symptoms, this time including back spasms.

My cardiologist said Repatha doesn't cause musculoskeletal problems, although my PCP and a neurologist say it does, that it's just not as common as with statins. So I feel like I am being gaslighted by my cardiologist and I'm currently looking for a new one. I am also going to the Mayo Clinic Statin Intolerance Clinic mid-January.

I am very worried because there don't seem to be any good options beyond statins and PCSK9 inhibitors. I wish I could tolerate Repatha. I wish I could tolerate Lipitor for that matter. My life would be so much easier. But I don't want to take something that inhibits quality of life the way that the statins and Repatha have.

I have seen comments on the forum here like, What good is having low cholesterol if you can't get out of bed? so I can't take credit for it, but that is how I feel about it too.