Leqembi: Anyone else taking this infusion to slow dementia?

Posted by badlandsgirl @badlandsgirl, Mar 11 3:56pm

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.

I had been aware he had issues. He was diagnosed with Alzheimer's in 2018. He will have his 13th Leqembi infusion in about a week. His cognitive level drops have definitely slowed. I am waiting to see what occurs when he completes the infusion. He will also get an MRI then

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@trustinghim4u

I had been aware he had issues. He was diagnosed with Alzheimer's in 2018. He will have his 13th Leqembi infusion in about a week. His cognitive level drops have definitely slowed. I am waiting to see what occurs when he completes the infusion. He will also get an MRI then

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@trustinghim4u Welcome to Mayo Clinic Connect! I see you’ve been on Connect for a few months and decided that you should just go ahead and post something. You mentioned ’he’; is that your husband that you are being a caregiver for? Maybe you could tell us a little more about yourselves. How long have you been a caregiver? Is everything going smoothly? Are there any problems that the members can help you with?
What support do you have for your caregiving?

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@trustinghim4u

I had been aware he had issues. He was diagnosed with Alzheimer's in 2018. He will have his 13th Leqembi infusion in about a week. His cognitive level drops have definitely slowed. I am waiting to see what occurs when he completes the infusion. He will also get an MRI then

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This is very interesting. I don’t know anyone who has taken this medication. It sounds like it has had some impact so far. Do you know how the MRI results confirm change? Best wishes moving forward.

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@becsbuddy

@trustinghim4u Welcome to Mayo Clinic Connect! I see you’ve been on Connect for a few months and decided that you should just go ahead and post something. You mentioned ’he’; is that your husband that you are being a caregiver for? Maybe you could tell us a little more about yourselves. How long have you been a caregiver? Is everything going smoothly? Are there any problems that the members can help you with?
What support do you have for your caregiving?

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The medication is doing what it is intended to do. It buys time. My days are full. He helps in ways he can. Even with housecleaning. He is the same kind of man he always was. Kind and loving. I do try to have a day here and there when I have an hour or so.

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My husband is in year four since his diagnosis of AD. He has been on Lequembi for 18+ months. He has had no notable side effects. Once or twice he had a light headache two days after which may, or may not, have been due to the infusions. We report it anyway.
His neurologist is impressed with how well my husband is doing with the very slow progression. (I agree.) my husband is still in the mild cognitive impairment stage.
His neurologist said almost all of his 40 patients have been seeing positive results.
We know it won’t go on indefinitely but we are very fortunate to have gained this valuable time.
Best of luck!!

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@allit

My wife started the infusions last Friday. Thankfully she didn't have any infusion reactions. She's 64 and was diagnosed in January 2024 with MCI with Alzheimer's pathology. We're just hoping for the best. We're in a support group for Younger Onset Alzheimer's and a few people in the group are getting the infusion. They are going to have a separate group that meets once a month starting in November through April just for people who are getting Leqembi or who qualify for Leqembi but haven't started yet. We're looking forward to attending those to find out more about what we can expect.

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Hi @allit, you may also be interested in this related discussion:

- Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65 https://connect.mayoclinic.org/discussion/caregivers-early-onset-alzheimers-diagnosis-age-19-to-65/

How are you and your wife doing?

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@trustinghim4u

I had been aware he had issues. He was diagnosed with Alzheimer's in 2018. He will have his 13th Leqembi infusion in about a week. His cognitive level drops have definitely slowed. I am waiting to see what occurs when he completes the infusion. He will also get an MRI then

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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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@celia16

This is very interesting. I don’t know anyone who has taken this medication. It sounds like it has had some impact so far. Do you know how the MRI results confirm change? Best wishes moving forward.

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MRIs are performed to monitor the medications’ side effects, not the progression of the disease.

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@colleenyoung

Hi @allit, you may also be interested in this related discussion:

- Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65 https://connect.mayoclinic.org/discussion/caregivers-early-onset-alzheimers-diagnosis-age-19-to-65/

How are you and your wife doing?

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Thanks for the suggestion.

She’s had two infusions so far. As far as we can tell she’s doing ok. She’s having some side effects from rivastigmine so it’s hard to tell if some of the things she’s experiencing is from that or the infusion. It’ll be good to get the MRI results after the fourth infusion to make sure everything is ok.

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