Early Onset AZ Newbie

Cardenas1816

I’m new to this community. I am (51F) taking care of my dear husband (56M) who was diagnosed at the beginning of January of this year with mid-stage early onset Alzheimer’s dementia. There were signs starting about 3 years ago that I just didn’t associate with dementia, and I (mentally) kick myself for not realizing something was wrong sooner.

We have been trying since January to get him on Leqembi or lecanemab with frustrating delays at every turn. The latest delay is that the registry he must be on to receive the med won’t accept people under 65. Has anyone else been able to successfully work through this issue?

M1

Welcome to the forum, you have come to a good place for advice and support. That said, there are still very few members who have/are using Leqembi—it's still that new. Since it seems to work best in younger males, one would think your husband would be a good candidate. Sounds like insurance BS in all likelihood. I hope you can be a squeaky wheel for him.

Meanwhile I hope this forum can support you in other ways. So sorry you are facing this at such a young age.

m3ghan

I'm in a similar situation - my DH (57) was diagnosed with early onset last month, after 2 years of language difficulties. We are working to get him on lecanemab now. I am not aware of needing to be on a registry - is that something specific to your state or your insurance?

Cardenas1816

https://alzconnected.org/discussion/comment/226613#Comment_226613

We were told it is a national registry (AlzNet) that the infusion center has to be on. I think there may also be another patient registry. We have been trying to get him this medication for almost a year now. I hope you have better luck in getting it faster.

Cardenas1816

Update - we are STILL fighting to get lecanamab started for my DH. Insurance denied every appeal in an attempt to stall until he is past the stage where it can help him. We are now being told he will start infusions in the next 2-6 months. Very frustrating.

DH believes the infusions will save him (although he’s been told several times that it only helps by 27% and isn’t a cure). I want him to start the infusions so that he has some hope.

Lgb35

https://alzconnected.org/discussion/comment/226623#Comment_226623

is it a patient registry or a manufacturer approved infusion center? Sometimes drug manufacturers will only supply to specific infusion centers. Check and see if that is the hold up

Cardenas1816

It’s a patient registry. I don’t think supply is the hold up.

MaryMN

Have you tried working with/through Leqembi's website? The manufacturer, Esai, has insurance and financial support available for patients and their families. Here's the link:

https://www.leqembi.com/en

mbald

My DH was diagnosed in January with MCI (57 yrs old) and he has his 2nd infusion treatment tomorrow. We waited for donanemab given he has double e4 gene. First infusion went well with no side effects.

lindamelder

My DH was diagnosed with MCI in the Fall, 2024. He started Donamemab infusions in February, 2025. He was fortunate to have gene 3/3. He's had 3 infusions so far with no side effects. The next infusion is early June and will be the first double dose.