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Hi @llgrnd, welcome to Mayo Clinic Connect! Congrats getting Inclisiran #1 today. I am hopeful for all good outcomes right along with ya.
I started apheresis in 2019 and believe I had 117 every-other-week treatments. I had an AV fistula created for better access to my veins pretty quickly after starting. I was told I would continue treatments “for life, or however long my body would tolerate the treatment”. Inclisiran is how I was able to discontinue apheresis and subsequently my AV fistula shut off.
I do not have elevated LP(a) but a significant amount of patients at my treatment center were there for that reason. Each treatment lowered my LDL 70% and then it would go back up over the next week or so. I learned a lot through the experience and am happy to share anything that will help you. Ask away!
What clinic would you go to? When is your consultation?
Replies to "Hi @llgrnd, welcome to Mayo Clinic Connect! Congrats getting Inclisiran #1 today. I am hopeful for..."
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Thank you so much for getting back to me! I wasn't sure how this site works. Sounds like you've had quite the journey. I should have said I've been referred for a consult. It's with Dr. Moriarty at KU Med in Kansas City near where I live. I have not heard from them yet, but I'm hoping to soon.
Lipid apheresis sounds like such a drastic measure....so time-consuming and probably exhausting....not to mention the thought of a fistula or port sounds terrifying. I've been told Inclisiran will not lower my LP(a). Have you found that to be true? I thought I'd get a head start with at least lowering my LDL as much as possible until I have the consult and can wrap my head around apheresis.
I'm hopeful that the new drug studies come up with an easier fix for LP(a) soon!
Anyway, I have had no reaction at all to the Leqvio shot I had today. I'm glad to know you are there for a resource. As I have more questions, I will reach out!
Thanks again!