← Return to Alzheimers care and treatments: Consult with Mayo Clinic?

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@japlok

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.

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Replies to "Thank you for sharing you and your husband's experience thus far. How is he coping with..."

@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.