Experience with Donanemab and Lecanemab

Hi. Does medicare cover the cost of these drugs? If not, may I ask how much each treatment costs?

@theglobalnomad1
Thank you so much for the valuable feedback.

@suezann , I don’t know. Hopefully, someone will chime in about it.

My wife has just been diagnosed with mild Alzheimer’s..her blood test came back as a3/a4 .. we have the opportunity to start one of the infusion treatments…we are both in our early 80’s , I have been reading about some less than positive reviews of these treatments, would appreciate input.
Thanks

@joemurphy43 I go through this site every morning and try to be helpful with what's happening to my husband, as helping others is making my journey a little easier. My husband is on Lequembe, Medicare approved, a few people have asked about the cost, but I'd have to look at the Medicare sheets and his Plan G, I know it's expensive but covered except whatever your gap deductible is. My husband is on the 16th infusion, he has two left before he goes on maintenance. I don't know if I see a "huge difference." I do see that he's more aware of keeping his nap sack (with this things) in one place, the car key and the phone. Before he was losing everything, all the time. I do believe his short term memory loss is a bit better, he remembers people's names when talking, he doesn't trip up the way he did before. But his ability to sequence and work through issues in the house and be a helping partner, isn't there. For us, the infusions, were a no brainer. Anything that might help slow down this horrible disease, is the way we felt we had to go - and he was very positive over doing it. In the program, we're in, in South Florida, the infusion center has a GUIDE program, that monitors, a nurse to answer phone calls, that helps if you need help, and my understanding is an additional $2500.00 if you need some companion home care (so you can get away from doing everything every day). I haven't checked into that yet, but I'm going to. I can only tell you one day I was sitting at the neurologist, and a man who had been on 16 infusions, came in with his wife. He was able to fill out the form for the first time. They saw marked improvement; his wife noticed and so did he, a big difference in his memory. We just have to take the good with the bad, and hope the risk taken results in a slowing down the progression. Hope this helps. Best, Karla

@joemurphy43 PS, I just posted an answer to you, but my husband on the lequembe treatment is almost 79 years old. And the man I referenced in my answer to you, who did see an improvment was in his upper 80's.
Best, Karla

My husband's on his 7th Kisunla (donanebab- sp?) infusion and he chose that over Lequembi because it was only monthly instead of twice monthly. He only has 1 copy of the ApoE4 gene, which lessens the risks (Kisunla had slightly more risk than Lequembi, but several factors help lessen the risk), but we both felt since an MRI is done after each of the first few infusions to check for ARIA (microscopic brain bleeds, the main risk) the potential benefit was worth it and he has shown no ARIA so far. The entire process takes about 1-3 hours and he has had no side effects after the infusions, not even tiredness, BUT he does have a reaction during the infusion, after the first 5 minutes. His face gets very flushed and he says his head feels "weird". Each time they have paused the IV, and given Pepcid and an anti nausea drug via IV. Each time after the infusion is stopped, it only takes a few minutes for him to return to normal and then they restart the infusion, sometimes at a slower rate. This is why I mentioned the 1-3 hours! They have to observe him for 15-20 minutes before restarting the infusion, then depending on the rate, it may take an hour to finish, then they have to observe him for another half hour! He has no aftereffects and by the 6th time, he was able to "gut it out" and not pause the infusion and now on the 7th, they start at a slow rate but increase it every 10-15 minutes and he finally got to the full rate with no problems. The reaction is uncomfortable to him, but not painful and no problems afterward. Hard to tell at this point if it is slowing the rate of decline since we don't know what a "normal" rate of decline IS! But after the next one (the 8th) there will be another diagnostic MRI that will show if the amyloid placque have decreased in size and I'll let you know what we find out. He was diagnosed very early in the disease, which is a good factor in whether it will work and lessens the risks. His centiloid level was 47 if that means anything to you. That is the reason I harp on everybody to get definitive testing if you suspect MCI!! It cannot hurt (you either have Alzheimer's or other dementia disease or you don't) and it can make a MAJOR DIFFERENCE in what options are available to you. My husband's sister was too far into the disease to take the infusions and she does not recognize him now. They've tried Aricept and several other drugs. 3 out of 4 of his siblings have Alzheimer's ....

@joemurphy43 Also, I do notice from possibly the infusions, my husband seems a bit more engaged, not those blank stares I was getting. Also, when I talk slower to him, he seems to do better, to make it easier to engage. Hope this helps.
Karla (in response to your note about the infusions....)

My wife is 70 and was recently diagnosed with Alzheimer's Disease. Her specialist has recommended Kisunla infusions and the first one is scheduled for May 13, so in about 2 weeks. Her only symptom right now is really bad short term memory. She is fine and her usual wonderful self in all other ways. We just got back from a two week trip to Portugal and had a wonderful time. So I am really torn about the infusion treatments. She seems to want to do it, and I am generally in favor of it also--as in anything that will give her more time before more serious symptoms develop. But the risks really trouble me, as well as articles (some very recent) questioning whether the infusion treatments really help. I would appreciate any and all viewpoints and experiences, positive and negative, about this. Thank you.

@paul55
Hello, Paul!
Similar situation with my husband at 73. First, congratulations on getting to Portugal! We signed up two years ago, but with all going on with tests last fall, I almost canceled it; however, daughter urged us to go, and it was so worth it with wonderful memories!
Now we are focusing on the Kisunla infusions, required MRIs, and communication with the neurologist. Our life seems built around those things. There are good friends and activities at church that I can engage in, but my world is a little smaller as we focus on calm and not running around. I go to a support group and am still processing after the first year of observing memory lapses and bad judgment. My husband is also taking Aricept and feels that he is much better than the humongous step down he took last year. I think it is helping to some extent, but I have taken over driving and we do any computer decisions and bill paying together. He thinks he is doing so much better that he is back to normal.
As far as the infusions, he has had two, with the only real concern an unusual-for-him headache the day after the second one. Doctor ordered an additional MRI that showed no ARIA, so we are preparing for the third infusion. Maybe ???? the infusion treatment is helping, or maybe it is the Aricept, but he definitely is better than the foggy moments we had months ago.
I am grateful that he started treatment early on, as tests have indicated Alzheimers in his future. Of course, there is no predictability. We just tried to get financial and legal things in place and put in motion some plans to relocate— in my mind sooner than later to be nearer to family, but of course we are tied into the treatments just now. As I am sure everyone on this thread knows, it’s looking for some joy to be had one day at a time, and some days are easier than others. A friend who has had experience with her husband’s disease told me to treasure the frustrating moments: for instance, I think I park the car perfectly well, but my husband gives me a detailed analysis of how I could do it better EVERY TIME we go out and tells me that we need to go to an empty parking lot to practice (that had not happened yet). I am just trying to remember to treasure that for the days that may be ahead.
God bless you as you make your way through the decisions at this time.