Early Onset AZ Newbie

Cardenas1816 · October 17

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 · October 17

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 · October 25

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 · October 25

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.

Early Onset AZ Newbie

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