@jlharsh Thank you for the kind response.

My trip to Mayo's Statin Intolerance Clinic was one time only (at least for now). Yes, it was a hike; have to fly through O'Hare, change planes; six/seven hour of travel time). I found about it here on this site; without going back through the posts, it may have been yours. I am pretty sure I recall you mentioning Dr. Kopecky; it's been a rough patch for me, with so much going on, that my memory is shot!

I wanted to go because my cardiologist said my musculoskeletal problems couldn't be caused by Repatha; he also told me something wrong about the half-life, all that info on Repatha's website, incidentally, and it's in their commercials that it may cause back pain. And there's that NIH clinical study published a couple years ago, the one done at Wilkes-Barre Veterans Center, testing adverse effects on people taking PCSK9 inhibitors (that I also found out about on this site).

The open-heart surgery to repair the aortic aneurysm was the worst thing I've ever been through; I said to the surgeon's nurse practitioner while I was in recovery that I didn't know it was possible to feel so bad.

So of course I want my LDL to be at 50 too (the doctor's goal, which it was at for a while when I was on 80mg of Atorvastatin, because I don't ever want to go through another cardiac event. And I had been on five medications that either I couldn't tolerate or were ineffective.

It looked like I was running out of options, so after finding out about Mayo's Statin Intolerance Clinic here, I talked to my primary care doc about it and he did a referral.

What did I learn? The lipo(a) info was new to me. I felt so bad, I didn't know if I would be able to do the treadmill exercise test, but they said I did a good test. The ECG was fine. I can't really say that, beyond the lipo(a) info, that I gleaned any new info from the testing.

He said that I shouldn't take Repatha anymore; there are people (obviously) who can't tolerate it. For me, I felt like I injected poison into my body. I had been off it, I think 97 days when I was at Mayo; he said it would be cleared from my system.

My primary care doc has said for a while that he suspects I have fibromyalgia. Dr. Kopecky and I talked about it. He thought that diagnosis seemed apt and that I should pursue it. I am seeing a physiatrist / physical medicine & rehab doctor at end of this month.

I am not crazy about that diagnosis, tbh. My primary care doc has explained that there's no testing to confirm it; it's a diagnosis when all other testing has been negative (as mine have been). Other than pain and stiffness, which is MUCH worse when I am on statins or Repatha, I don't have any of the other side effects: no sleep problems, e.g.

I have some longstanding myofascial restrictions caused by years of sitting at a desk at my jobs and bad repetitive movement patterns. I think the cholesterol-lowering meds just amplified, or hammered, those place. But I have to see what the PM&R doc says. The treatment is pain management drugs (yay, more drugs) and lifestyle stuff that I already do.

Re: the latter. Dr. Kopecky, you probably know, authored a book on aging, and he is a cancer survivor. He said to me, about movement, "I say to people, if this is all you can do, do this," and he held up his index finger, moving it at the joints like the red rum kid in The Shining.

After our talk, he had an exercise physiologist come in and talk to me about exercise, and he gave me a couple of booklets. I've always gone to the gym, and I have had a lot of PT. I WANT to stay active. He didn't really tell me anything I didn't already know (I don't mean to sound like a know-it-all; he, like everyone I met with at Mayo, was pleasant, etc.). Basically, he was like, make sure you push yourself. I've been having myofascial release therapy for a while, and Dr. Kopecky said to keep that up.

No other info on what to expect re: recovering from Repatha. I guess I "fired" my old cardiologist. When I asked to see a cardiologist who's in the same practice and who was recommended to me, the office said they would have to do a transfer of care.

The new cardiologist told me her husband couldn't take statins; how she said he felt was how I felt. And as I already said, she acknowledged that some people can't take PCSK9 inhibitors, either, and for them Inclisiran works.

I'm hopeful, of course, that Leqvio works. I am still feeling my restrictions, but better each day, I think, and no longer like I can barely walk. I believe my "old" places were just made much worse by the Repatha.

*Talked about diet, too, with Dr. K. When I stopped Repatha in November and wasn't on any cholesterol-lowering meds, I doubled down on clean eating. I don't eat red meat, fast food or processed food or fried food, for the most part. I should have been more attentive about my diet before anyway; I wasn't eating Big Arches every day or anything like that, but I could have been more conscientious.

Last ("mercifully!" you're thinking): Both Dr. K and my new cardiologist said if Leqvio didn't lower my LDL enough, Ezetimibe (Zetia) might be added.

Thank you again for the info you've provided and your concern.