Alzheimers care and treatments: Consult with Mayo Clinic?

@japlok Kudos to you for doing all the work to ensure the best outcome for your spouse. My husband was diagnosed with AD in December 2024 and is currently taking Leqembi. The infusions are twice per month for 18 months. I would definitely get your loved one tested at Mayo Clinic to see if she qualifies for treatment. If you decide to begin the infusions of the approved drugs, hopefully you can do this close to your home in Indiana. Best of luck and keep us posted. I have found it can be helpful to read the posts of others on similar paths.

@colleenyoung, Thank you for all of the additional information. I am so grateful for the kind and thoughtful people like you and others posting here to help me and my wife get through this.

Thank you for sharing you and your husband's experience thus far. How is he coping with the infusions? What kind of side effects is he experiencing? My wife passed the test and qualifies for Leqembi. She is currently waiting for the red tape to be completed (financial) before they will schedule her infusions. She is worried that the reactions she will get resemble those of Chemo. Please keep us all posted on how well your husband is doing and again, thank you for your advise.

Thank you all for your advice, comments, and well wishes. I am now in a quandary about something. My wife has been approved locally to get Leqembi which will probably start in about a month. She was also accepted for an appointment at the Mayo Clinic and she has an appointment scheduled in September. That means she will have possibly had a few infusions by the time the appoint at the Mayo arrives. The last thing we want to do is delay the treatment so we will go with the treatments prior to the Mayo visit. Is that the proper approach? The Mayo Clinic has all of her records including her approval for the treatment but they still approved her for an appointment so I am not sure on what to do.

@japlok I am happy to share any information I have. My husband will get his 9th infusion on 6/26. I have been taking consistent notes regarding any side effects. Let your wife know that at the infusion lab she will see people getting infused for different issues. We bring books, cell phone, cards, and download funny movies and food to our infusion day. It is a long day...
Receiving Lecanemab can have side effects that will be discussed before your wife begins treatment. The docs are constantly monitoring for stroke-like symptoms and ARIAs. Luckily my husband has not had any serious side effects. I have noticed a pattern of fatigue and confusion of short-term memory on day 2-5 after the infusion, and agitated sleep for one night. After that he seems less confused and clearer in his thinking. He has had 3 MRIs to check for brain bleeds and inflammation. The first one he had none, at the second one a small inflation was detected. He had a follow up today with another MRI and the inflammation subsided. He will be continuing with the twice monthly infusions.
It is an exhausting time for both the patient and the caregiver. We travel over an hour and a half each way to get to the closest hospital for the infusion. My advice would be to start the infusions locally but still keep the Mayo appointment. I would recommend that you take advantage of any support offered to you or your wife. It really helps to know other folks traveling on this journey. Feel free to keep in touch.

@japlok this is great news!

If this were me, I would call Mayo and have a conversation with them about where you are at. They are in the best position to know your options.