How early to begin infusions?
I have MCI and a PET scan identified amyloid plaque levels that are significant. My Centiloid measure was 32. My doctor has prescribed Aricept but advised against infusions because of the score being low and possible side effects. I have read that the earlier, the better.. Should I get a second opinion?
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Hi @cjw1510 - welcome to Mayo Clinic Connect.
Just for clarification, I believe you are speaking of intravenous (IV) monoclonal antibody infusions, such as lecanemab (Leqembi) or donanemab (Kisunla)?
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1 ReactionYes, that is what I referred to.
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2 ReactionsI am on Aricept 5's and scheduled for my PET Scan next Friday. Been on Aricept for one year and my doctor says once I get on Leqembi, I should continue to take my Aricept. I'll let you know my PET Scan Centeloid score when I get it. Good luck. The Aricept 5's worked wonders on my memory issues but I didn't progress to the 10's as I felt they were too strong when I tried them.
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2 Reactions@midnightwalker Thank you and all the best to you!
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2 Reactionscjw1510 I just got my PET Scan results and am at 34.9. As I stated before, I am on 5 mg Aricept and it seemed to help but now that my Scan came back at nearly 35, I am scheduled to begin Leqembi very soon. The PET scan was the last piece of information before facing the fact that things weren't just going to disappear or never advance. Another opinion? Sure. Same results? If you need to check with another opinion, you should. Let me know how it goes and take care.
@midnightwalker Thank you so much for your update and I wish you all the best - good results and good health!
Did you have a previous PET scan that was lower than 34.9? If so, how long between PET scans? My doctor says my insurance (Medicare and a supplement) won't cover multiple PET scans and I need to check on that to see if I can get another one in a year. Again, I appreciate your sharing!
@cjw1510 No, Just one MRI, some blood work , and one PET Scan. I believe the PET Scan runs over ten grand if that's possible...crazy prices on everything. I asked AI if my blood work scores and the PET Scan scores could be correlated and it came back with saying they were just about a perfect match as well as explaining in detail how they matched up. I was amazed at how it did that so fast...and I understood it! Your 32 is above the threshold, I think? Your blood work should help you identify your amyloid count whether you are e3/e3 or something else. I have been on Aricept 5mg and will continue with that. You will get some wild interesting dreams perhaps. Let me know if you feel like sharing your experience with it...it helped me with daily "finding things"...
Thanks again for your reply. I am not sure what e3/e3 is. My blood work showed a beta 42/40 amyloid ratio of more than 102 and it says that below 102 would suggest a higher probability of an AD diagnosis...so I came in just above the wire 🙂
I have been on Aricept for 3 weeks now and have no noticable side effects, no wierd dreams 🙂 Even though 32 is above the threshold, my doc doesn't prescribe infusions. At first I was very concerned but we talked a lot and he explained that it is still low and that it doesn't necessarily mean it will progress. I don't know how we will know unless we do another PET scan in a year or so but not sure if Medicare will cover that. The whole insurance industry needs a major overhaul!
Caron
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