1. < Caregivers: Dementia

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.

cnutt | @cnutt | Mar 10 7:10pm

My husband is on his 3rd infusion of kisunli or donenamab? No side effects at all yet and hard to tell if it’s helping. Worth the risk in my opinion.

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badlandsgirl | @badlandsgirl | Mar 10 10:45pm

I can certainly understand your thought process. We will receive infusion #31 tomorrow. We will fight this disease with all our might and I will take whatever extra time God will give me to be with my husband. You will make the decision that is right for you 💜

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 10 11:21pm
In reply to @lsmkc "My husband was diagnosed with mild cognitive impairment due to AD six months ago. He is..." + (show)
@lsmkc

My husband was diagnosed with mild cognitive impairment due to AD six months ago. He is APOE4, likely to risk the most side effects with Leqembi. We’ve been in conversations with neurologists and doing research on our own. Whether or not to start Leqembi will be a very tough decision.
My husband has a different rare disease that recently required infusions once a month for six months. We learned a lot from that experience. Though his medications had no negative side effects, getting regular infusions was physically and emotionally difficult. His veins developed scar tissue after only four infusions making it increasingly difficult and painful to find the vein. Each infusion took over 2 hours (plus drive time and wait time) requiring doses of steroids and Benedryl to ease reactions to the drugs. We understand these extra measures are common for patients on Leqembi too. The thing that kept us going was measurable, positive results. Blood tests showed us exactly when he went into remission.
Now, faced with the decision about Leqembi, it’s very hard for us to imagine eighteen months of infusions every 2 weeks, plus several MRI scans, and the risk of dangerous side effects - with no measurable results. The studies show the median amount of time Leqembi slows AD is six months, but there’s no way to detect or measure results for any one individual. He won’t feel any better. The AD will still progress. Even if they could guarantee my husband the extra six months, we’d pay for those months with eighteen hard ones.
My husband is extremely physically fit. His AD symptoms are very mild. We want to guard his quality of life now, while he’s at his best and can enjoy it.

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@lsmkc Welcome to Mayo Clinic Connect! Sounds like you have all the details under control for your husband and his impairment! And you’ve given such a great description of your journey so far. And your plans for the future! You’ll be a great asset to MCC!

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ret2tus | @ret2tus | Mar 11 10:32am

My husband was diagnosed with Alzheimer's in the fall of 2023. He started Leqembi infusion therapy in January 2024. Although he didn't suffer any bad side effects, he decided the risk of a brain bleed (which is why frequent MRIs are required) wasn't worth the relatively slight slowing of the disease. And, as lsmke said, there is no way to really measure improvement. We didn't notice any change in the four months he received the infusions. Also, the time and trauma involved in getting the infusions is a factor itself.

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cnutt | @cnutt | Mar 11 10:59am
In reply to @colleenyoung "Welcome @trustinghim4u. I moved your posts to this existing discussion to connect with others talking about..." + (show)
@colleenyoung

Welcome @trustinghim4u. I moved your posts to this existing discussion to connect with others talking about Alzheimer's and Leqembi

- Leqembi: Anyone else taking this infusion to slow dementia?
https://connect.mayoclinic.org/discussion/leqembi/
You may also be interested in following the discussions in the Caregivers: Dementia support group here: https://connect.mayoclinic.org/group/caregivers-dementia/

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My husband taking kisunli. His 3rd infusion coming up next week. No side effects so far. Hard to tell if it’s helping. Wish there was a definitive test. He seems to be holding his own, with bad days when he’s tired or overwhelmed..

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mablesmith | @mablesmith | Mar 11 11:01pm
In reply to @badlandsgirl "I can certainly understand your thought process. We will receive infusion #31 tomorrow. We will fight..." + (show)
@badlandsgirl

I can certainly understand your thought process. We will receive infusion #31 tomorrow. We will fight this disease with all our might and I will take whatever extra time God will give me to be with my husband. You will make the decision that is right for you 💜

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Has your husband had any reaction from the infusions and what is his age? This AD/MCI journey is not for the faint hearted.

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1 reply
badlandsgirl | @badlandsgirl | Mar 12 8:29am
In reply to @mablesmith "Has your husband had any reaction from the infusions and what is his age? This AD/MCI..." + (show)
@mablesmith

Has your husband had any reaction from the infusions and what is his age? This AD/MCI journey is not for the faint hearted.

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My husband is now 73...he had a bad reaction after the first infusion. By the 5th we pretty much had it under control with premedication. Now, it's just tiredness. You are correct that it can be a full time job! Take care of yourself 💜

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moea | @moea | Mar 12 9:30am

Thank you very much for opening this discussion. My husband, age 76, has just begun his infusions with Lecanemab (Leqimbi). He had his first infusion a week ago. He was diagnosed with MCI three years ago and the progression has been slow, although we both noticed advancing memory loss in the past year. He tested positive for brain plaques and has one genetic code for Alz disease. A high intensity MRI showed no brain bleeds. He qualifies for the infusion due to all of the above. We live over an hour from the infusion site and it was a long and tiring day for both of us. The first 4 infusions are lengthy as the docs are monitoring my husband for any issues. The side effect they are concerned about are the brain bleeds. That is why MRIs are given frequently.

We weighed the pros and cons of the Lecanemab and decided to go ahead. His father had Alzheimers disease as did my mother, so we know what the future holds. We will try anything to stop or slow progression.

I try not to future trip as I have no control over anything. I meditate daily, exercise most days, and pray. I think of all of you and how we all have different stories. Thanks for giving me courage and a community to turn to...

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badlandsgirl | @badlandsgirl | Mar 12 10:06am

We each have our own journeys and do what our loved ones want and feel is best. There is no right or wrong with this horrible disease.💜

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