My 72yo husband was diagnosed, via PET scan, last October, as having MCI due to Alzheimer’s. This is a very early stage. He was actually diagnosed with MCI several years ago, which was probably the beginning of AD, and has declined somewhat. He is also APOE4, which increases the risks from Lecanemab treatment. But he is otherwise in excellent health. After a lot of discussion with his geriatrician, we decided to go with it. We know what will happen without treatment. 😢 So it seems worth the risk, and the time commitment, to try to slow down the disease, and are hoping to keep him in early stage until one of the better drugs currently in the pipeline is approved. The bottom line, I think, is to start as soon as possible. Just the approval process can take several weeks. Are you close enough to a facility that does offer it to get the treatment, even if means some travel?

We do have Medicare plus a supplemental policy. If our supplemental refuses to pay, our cost will be about $800 per infusion. We have to drive 5 hours round trip to a major medical center to receive the infusions (or to see his geriatrician). He had the first one a week ago (no aftereffects at all), with the second coming up next week. We rented an Airbnb house near the med center for a month, which gets him through the first three infusions. We will most likely spend the night following each infusion after that rather than drive home the same day.

Good luck and keep us posted!

Hi, makking. I'm sorry your husband still has lingering effects from Covid. That is so hard, especially still trying/needing to work. I understand your concern considering he has had reactions before. My husband is the opposite: never a side effect from anything. And he just doesn't worry about it. I've read everything I can find on line about lecanemab, including medical journals, comments on articles in those journals, NIH reports, details of the death of one of the trial participants who continued on the drug after the trial (probably received the placebo during the trial), and what contributed to her death. There are doctors/scientists who support the treatment, and those who don't. I'll try to find those articles and send the links. Our own scientist-son said basically the same thing about the drug as your doctor: it's just all we have right now. (Husband has been on Depakote for mood stability for several years, and added Aricept when blood work showed he was at high risk for AD. Geriatrician also said hearing aids are very important, if needed, and at least 150 mins of moderate to strenuous exercise per week. Get the heartrate up.). Alzheon has a promising pill in clinical trials now, and there are a couple more coming down the pike, none of which have the problematic side effects, and work in different ways from lecanemab. Perhaps they can even be combined.

As to your questions: 1. At first we chose to not to receive treatment and to just focus on living fully without worry about side effects. But it didn't feel right, and after talking again to his doctor and other medical friends and family, we changed our mind. His doctor said having seen the ravages of AD, he would choose to treat himself in the same situation and accept the risks. And just having AD already increases the risk of ARIAs even without treatment. My husband has much the same attitude as his doctor: not afraid of death; no worry about side effects; trust in the medical/scientific research field. He does fear disability, but there have been no reported cases of permanent disability from the side effects. And he can continue to do all his favorite outdoor activities while undergoing treatment. One more note - his doctor starts his APOE4 patients on a lower dose which he feels MIGHT reduce the side effects risk.

2. You're right that lecanemab does not reverse the damage already done. When I expressed my concern about the brief delay in progression v. the serious side effects, the doctor said we really don't know - there just isn't enough evidence to say how long progression will be delayed. Data is being collected from those receiving the treatment, and that will all go into the "big" data base. I like knowing we are helping to learn more about how successful (or not) lecanemab is. I also wonder if the treatment will continue indefinitely after 18 months, if it is working. That's one of my next questions for the doctor. Makers Eisai and Biogen are working on an injectable form that could be taken at home, although not expected to be approved this year. That would decrease cost, I would think.

Yes, being their advocate is overwhelming. As every provider as said to me, you must take care of yourself, too. I have started seeing a wonderful therapist who specializes in seniors with chronic illness and their caregivers. I am also, sadly, arranging to move my 93yo mother, who lives with us, to assisted living in another state where there will be family nearby to help care for her.

regarding your husband's Covid infection. my wife had Covid twice. i've been wondering if somehow this new diagnosis of MCI could be a result of the Covid infection and some lingering infection. like long Covid. has there been any consideration of that for your husband?

thanks. i'm thinking along the same line. even if Covid contributed, unless it is something that is still actively contributing to the amyloid plaque and tau tangle build up then right now we have to go with what is available. try to clean up the plaque and tangles and address symptoms that can be addressed. and keep up with any Covid relevant info. btw, my wife is genotype 3/3 which i think is interesting. i guess that means, she doesn't have the genotype that is related to the inherited form of AD. so does that mean this was all environmental and maybe due to other controllable factors? idk

I appreciate the information and discussion about LEQEMBI. My husband’s neurologist is definitely encouraging my husband with MCI to have the infusions. I was wondering if any of your DLO’s have tested high on the t-pau217.

My husband did not have that test. But wanted to let you know there are several Leqembi discussion groups on the forum and to suggest you check/post on all of them. Best wishes to you!

thanks for posting about Alzheon. i wasn't aware of them. here's a link to their products in development https://alzheon.com/pipeline/