@swilkins1974 I apologize for the delay getting back; I remembered someone asked me to report back.
I had to cancel my January appointment to Mayo's Statin Intolerance Clinic because I felt so bad; I knew I couldn't navigate the airport (it's a hike to Rochester from where I am, a long day of travel), handle my luggage etc.
I rescheduled for Feb. 16, which at that point I was a week past the three-month half-life. I still felt terrible, but was able to make it. I had an ECG, labs, and a treadmill stress test in the morning, then I met with cardiologist Dr. Stephen Kopecky.
He recommended Leqvio (Inclisiran). I had my first appointment with my new cardiologist in the town where I live on Monday this week. She agreed and didn't pooh-pooh my side effects. During the Mayo labs, they also did a lipo (a) test, which I had never had done before, and it came back very elevated; the normal number is 75, and mine was 150. It's genetic and not affected by lifestyle (diet or exercise) and there are currently no treatments; Dr. Kopeky and my new cardiologist both said there are some new drugs on the verge of being approved by the FDA to lower it, maybe even as early as May. It is a type of cholesterol that's a marker for heart attacks and strokes. So, yay, now I have that too. 😵💫
I bring that up because my new doc says the people with elevated lipo (a) tend to be intolerant of statins (which I can't take) or PCSK9 inhibitors like Repatha.
I asked her about side effects of Leqvio; she said she has 20 patients on it and knock wood (her phrase), no one has had side effects; there was one patient who it didn't help.
For me, I have to go to an infusion center for the shot. Once approved by insurance and scheduled, I'll have the first injection, followed by another 30 days later, then every six months.
There is another poster here (who, forgive me, I can't remember the name) who says she went on Inclisiran after being intolerant of statins and Repatha, and that she did not have any side effects.
So, I am hopeful, because I've been on five cholesterol-lowering meds that either I couldn't tolerate or didn't work (Nexletol). She says for some people, there LDL number goes to 5. Which would be a miracle for me. I haven't been on any cholesterol med since Nov. 11, my last Repatha injection. My untreated LDL tends to be around 130, and that's with clean eating and exercise. Because I have CAD and I also had open-heart surgery in 2022 to repair an aortic aneurysm, they want my LDL to be 50.
Besides feeling terrible while I was there, Mayo was a very positive experience. They make it very easy for you, and everyone I encountered was friendly, kind, professional. Dr. Kopecky spent a lot of time with me.
I apologize for the length of this. Man, Repatha really did a number on me. I think I'm still feeling the effects, although all the docs say it would be cleared out of my system by now.
Last, I hope I have not conveyed any wrong information, but it's possible I may have inadvertently. I'm sure you're regretting asking me to report back, but if I can answer any questions, please let me know.
@wgr123 I am so glad to read what you have been up to. You are making great progress on your road to protecting your heart. It sounds like making a trip to Mayo Clinic’s Statin Intolerance Clinic took considerable effort for you, and was extremely valuable.
I love finding things in common with people! Dr Kopecky helped me get my genetic cholesterol under control for the first time in my life, and after my experience taking Repatha. I get Inclisiran injections plus he helped to get me on a couple additional cholesterol drugs that previously caused problems.
Finding out about your elevated LP(a) is good information to know. The bloodwork I had done included some I had never heard of and is what helped them personalize my treatment. I am hopeful you are on a good path towards living your best life!
I have so many questions….What did you learn from the cardio testing you had done? Did either or your cardiologists give you an idea of what to expect recovering from taking Repatha? Will you see Dr. Kopecky again? Did you leave with lifestyle recommendations?