@jlharsh @tamig As mentioned above, I went to the Mayo Statin Intolerance Clinic in February. Labs showed my lipo(a) number was 150, twice the normal number of 75.
I had eight Repatha injections starting last August and eventually (not straight away, about three months into it) had terrible side effects; I had been off it roughly three months when I went to Mayo.
The lipo(a) info was new to me; I don't think I had ever been tested for it before. I don't want to say anything that I might have misunderstood that could be wrong. I went back and read Dr. Kopecky's notes before posting here; we didn't talk about Repatha in relation to lipo(a), only the side effects I had. I had a lipid panel at my physical in September, at which point I'd been on Repatha about seven weeks, and my LDL was down but not by much. Dr. Kopecky did say lipo(a) is genetic and not affected by lifestyle, such as diet and exercise; I thought I understood him to say that there was currently no treatment for elevated lipo(a); I would feel terrible if I'm saying something that's wrong, though.
He said that there are two drugs in clinical trials that are expected to be approved by the FDA to lower lipo(a), possibly as soon as May: Pelacarsen and Opalsiran. He pulled up a spreadsheet on his computer and said he was adding me to his list of people to notify, that I was number 328.
I met with my new cardiologist in the city where I live last week and she said the same thing, that they had actually anticipated that those drugs would have been approved already.
I was...alarmed that my lipo(a) number was so elevated, though heart disease runs on both sides of my family, so I guess it's not surprising.
Wishing the best for you.
@wgr123
What side effects were you having with the Repatha?
And your correct that nothing much can be done for the Lipoprotein a, it’s genetic.
My LP (a) is over 600, I was told I have so much in my bloodstream, that my number is undetectable-quite alarming, to say the least.
Where do you live, what Mayo Clinic do you go to?
I’ll be starting my 1st dosage of Repatha today!