Leqembi: Anyone else taking this infusion to slow dementia?

Posted by badlandsgirl @badlandsgirl, Mar 11, 2024

Hello - My husband was diagnosed with Alzheimers Disease in June of 2023. The doctors at Mayo determined that he would be a good candidate for the Leqembi infusions. He received his 5th infusion today. We are hoping to chat with other folks receiving the infusion to share experiences.
Prayers to everyone dealing with this awful disease.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Profile picture for ret2tus @ret2tus

@lbk1962 As it was explained to us, the infusions don't stop the progression of Alzheimers. They just slow it down for a short time. In other words, the patient is stable for several months but then gradually begins to decline again.
I would be interested in hearing from others if that's their understanding.

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@ret2tus yes, you are correct . My husband received infusions for 2 years and Leqembi did exactly what it was meant to do. The amyloid plaque was dissolved and the progression was slowed. The doctors say he would no longer benefit from infusions so they were stopped in January. We are searching for our next step in this journey and believe we have found it by participating in a drug trial for Buntanetap. 🙏🙏

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Profile picture for dells3 @dells3

We are trying to decide between the two treatments
The L. Or the D.
Centroid count is 44
18 months for treatment
Appreciate any input
Steve

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@dells3 My husband is currently on Leqembi. It was the only infusion available back in January 2025 for mild Alzheimers diagnosis at our hospital in Boston. At the one year mark his centroid value was 17. He is currently on a maintenance program and receiving Lecanemab monthly. If we had a choice back in 2025, we would have preferred the monthly infusion of D. We live 50 miles from the infusion site. It was tiring...The back and forth to the hospital really forced us to cut down on our travel, even locally. The process is a commitment as you know. Whatever decision you make will be best for your situation, but I suggest looking at the ongoing outcomes of each drug. Best of luck.

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My wife was diagnosed with early-onset Alzheimer’s in December 2024 and began Leqembi (lecanemab) infusions every two weeks in January 2025. Since then, her neurologist has closely monitored her for any progression in cognitive decline, and so far there has been no measurable worsening.

In September, she will transition to once-a-month infusions. We are hopeful—and praying—for continued advances in treatment that will help keep this disease at bay.

We truly believe that, because of Leqembi, we have been given 18 precious months together that we might not have had otherwise. For us, that time has been a real gift, and we share our experience in the hope that it encourages others facing a similar journey.

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Just setting up my PET Scan before starting Leqembi. Were you able to drive yourself to and from the infusion center? We are only 6 miles from it, so hoping I can just come and go alone most of the time. Did her vision change during those times after the infusion?

I hope your maintenance continues to keep the beast at bay...who knew, right?

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My husband has been on Kisunla for 9 months now, and he could drive himself to and from his infusions, but during the 2nd one he started to have a reaction (his face turned beet red and he said his head felt "weird") and they stopped it for 20 minutes and when his normal color returned they started it at a much alert rate and he was fine. No after effects but every infusion since then he's had the same reaction, so I go with him JIC. The last couple he's had the reaction but is able to "guts it out" and they don't have to slow the infusion rate. It happens within the first 5-10 minutes and lasts about 10 minutes but they told us it is not uncommon. The good news is that the PET scan scheduled after the 8th showed significant reduction of the amyloid and his centiloid level was 17 (started last year at 42)! So it DOES do some good although it remains to be seen whether it can actually stop the progression.

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Autocorrect... that was supposed to be they started it at a much "slower" rate!

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Profile picture for dells3 @dells3

We are trying to decide between the two treatments
The L. Or the D.
Centroid count is 44
18 months for treatment
Appreciate any input
Steve

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@dells3 I'm just waiting to get my PET Scan so we can move forward. Choosing Leqembi because I'm pretty petite at 105 lbs and the one size fits all with the other drug didn't appeal to me. It sure seems like a long long time to be sticking needles in me though....what have you decided on?

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This is JoyceL10
I have been on Laquembi for 5months I actually feel worse than I did my memory is worse!!
Started on Arosept recently upset my stomach went of it
My gastrointestinal doctor is away till July 7 can’t wait!!!!
Not happy

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Profile picture for joycel10 @joycel10

This is JoyceL10
I have been on Laquembi for 5months I actually feel worse than I did my memory is worse!!
Started on Arosept recently upset my stomach went of it
My gastrointestinal doctor is away till July 7 can’t wait!!!!
Not happy

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@joycel10 When my husband went on Aricept years ago, he had extreme nausea for several days. I don't think I've ever seen him have nausea at any other time in our many years of marriage. I contacted his doctor via patient portal. By the time the doctor responded, the nausea had stopped and he's been fine on it ever since.

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