I am new to this forum
Hi
Im taking care of my 72 years old wife who was diagnosed for the last 5 years. She's manageable and taking all prescribed meds. Did any one has an experience with recent new IV anti-amyloid infusions Donanemab or lecanemab? She was not qualified because she is in moderate stage.
Even if we are willing to pay out of pocket of pocket which is around $2300 a month we can't use it so far. Its expensive but those meds are showing good results in maintaining the progression not a cure though.
Thank you
Best
Victor
Comments
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Welcome to this forum.
From what I have learned, it's for early stages only. Usually by IV infusion every 2 weeks for 1 1/2 years. Very expensive. It slows the progression by about 27%.
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@Victor Aung
Some of the reports I've read regarding the newer injection medications suggest they don't seem to work as well for women, people of color and the elderly. Given the risks and additional testing that are part of the protocol, I personally wouldn't consider it.
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My DH is in the early stages. The IV medication is every 2 weeks for lecanemab, The other I think is monthly. Side effects are of concern . MRI must be done frequently. We are looking into it. He is still a candidate and now that it is FDA approved insurance/Medicare is helping with payment. I'm not sure what our cost may be. DH had blood work and a PET scan this week and we see neuro end of month and they will determine if he can have it. I can comment more after that. 27% slowing I'm now not sure if worth the risks and 18 month commitment.
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I am in the don’t bother category. Lots of bad side effects. Unless the patient truly wants it it just seems to add a layer of complexity to an already difficult situation. I’m sure the other camp has valid reasons to try. Just contributing an opinion.
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This has been my understanding as well.
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I believe they are making progress, but to sit through IV injections every two week for 1 1/2 years seems extreme to me to slow the progression by up to 27%. Not to mention the cost.
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