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 geriele @geriele

My husband has been on Leqembi for 10 months and we are happy with the results. He has had none of the side effects, and his memory has not gotten any worse, in fact, if anything is a bit better. The negatives are not with the drug itself, but it’s with the process and procedure.
Transportation takes an hour.
After my husband is seated and set up for the infusion , he has an hour wait time before the drug arrives. They will not mix it before he is there, as it is expensive and custom mixed for his weight.
The infusion takes a full hour. The total process takes four hours out of the day. The room and the chair is comfortable, there is a TV and a very friendly staff. They even offer snacks and water.
We caught the flu from the Mayo Clinic in December, and three weeks ago, we got Covid. We wear masks except for when we are in the infusion room. We could not have caught these things elsewhere because there was no other place we went where we were with other people either week. The elevators are the worst place for catching diseases. This last time, I would not even go in with him, but stayed in the car. Otherwise, please take precautions if especially if you have a compromised immune system. (The Mayo Clinic is full of a lot of sick people.🤪)
You cannot travel further than 100 miles away, and you have to plan every activity around the infusion.
All in all, it is well worth it because I have not seen the deterioration that other people have seen.
We were advised for my husband to take the four hour driving test to see if he could still drive, and after months of waiting for the appointment, he was certified to drive last Monday. Our life is getting a bit easier. The drug works.

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Thanks for the information on your results. Great to hear of its effectiveness. Sorry for your tough visits. Our visits are local without any of the angst you had to endure.

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My husband was diagnosed with MCI through cognitive test on paper.
APO-E gene testing at a 2/3 gene.
Curious about infusion treatment. Concerned about the risk. Doesn’t seem to outweigh the benefit.

Experienced and thoughts, please.

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Profile picture for sasham @sasham

My husband was diagnosed with MCI through cognitive test on paper.
APO-E gene testing at a 2/3 gene.
Curious about infusion treatment. Concerned about the risk. Doesn’t seem to outweigh the benefit.

Experienced and thoughts, please.

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@sasham My husband's thoughts are we have to try something, that is why he is getting the infusions. We are trying to prolong our quality time together and I cherish every day. It is not the right choice for everyone as circumstances are different. Next week will be infusion #48. He has not missed one on this journey. We had a PET scan done in August 2025 to compare to the one we had done November 2023 and the amyloid plaque was reduced from 78 to 12 on the scale they used to measure. Because there is still plaque present, he is considered amyloid positive and Mayo doctors recommended staying on the 2 week regimen until February and repeat PET scan. This is what we will do as we trust the Mayo doctors. You will make the decision that is right for the two of you.

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Profile picture for sasham @sasham

My husband was diagnosed with MCI through cognitive test on paper.
APO-E gene testing at a 2/3 gene.
Curious about infusion treatment. Concerned about the risk. Doesn’t seem to outweigh the benefit.

Experienced and thoughts, please.

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@sasham i am pea green with envy for your husband’s gene pairing. A 2/3 is awesome in my book. I have 3/4 and that instance of 4 increases the risk of brain bleeds. I told my neurologist the day may come when I am willing to take the risk - but it’s not today. An instance of 2 improves chances of not developing AD as I understand it.

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Profile picture for pb50 @pb50

@sasham i am pea green with envy for your husband’s gene pairing. A 2/3 is awesome in my book. I have 3/4 and that instance of 4 increases the risk of brain bleeds. I told my neurologist the day may come when I am willing to take the risk - but it’s not today. An instance of 2 improves chances of not developing AD as I understand it.

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@pb50 I am APOE 2/3 as well but have enough amyloid & tau with shrinkage of hippocampus to try Lequmbi for amyloid and when trials are over, something for the tau tangles. I suspect the tau protein being inside the neurons is worst than amyloid being outside the neurons, and look forward to that treatment. Feel so lucky having the chance, unlike others in the family who died of Alz, to be treated.🥰

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Profile picture for maysh47 @maysh47

@pb50 I am APOE 2/3 as well but have enough amyloid & tau with shrinkage of hippocampus to try Lequmbi for amyloid and when trials are over, something for the tau tangles. I suspect the tau protein being inside the neurons is worst than amyloid being outside the neurons, and look forward to that treatment. Feel so lucky having the chance, unlike others in the family who died of Alz, to be treated.🥰

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@maysh47 I too am chasing away a profound family history of AD. I am on low dose Lithium Orotate (AMA). Sadly the speed to get to human trials is on a timetable that is slower than I fear disease progression will be. So I am taking the supplement dose of 5mg - and doing anything else I can.

If you aren’t aware, there is a freaking miraculous trial at WestVA U. They won’t take me Because of my APOE4. But they have a process to open the blood brain barrier with targeted ultrasound and put meds directly on plaque/Tau. - and it goes away. But prying open BBB introduces risk of brain bleed.

Here is AI Summary and look for a 60 minutes special on it a couple of years ago

AI
West Virginia University (WVU) has a prominent trial at its Rockefeller Neuroscience Institute (RNI) that uses a combination of focused ultrasound and Alzheimer's antibody drugs. The trial aims to improve drug delivery to the brain to reduce amyloid plaques and potentially slow cognitive decline, and has seen promising results like a greater reduction of plaques in targeted brain areas compared to non-targeted areas.

About the WVU RNI trial

Method: The trial uses focused ultrasound to temporarily open the blood-brain barrier, allowing Alzheimer's-treating antibodies to penetrate more effectively into targeted areas of the brain.

Goal: To accelerate the reduction of amyloid plaques and improve cognitive outcomes for patients with early-stage Alzheimer's.

Progress: Initial trials showed the procedure was safe and successful in opening the blood-brain barrier, and later studies showed an increased reduction of plaques in treated areas.

Next steps: The team is moving into the next phase to further accelerate plaque removal with the focused ultrasound and lecanemab antibody drug.

Collaboration: The WVU team has also been working with West Virginia University Medicine and collaborated with INSIGHTEC, an Israeli medical technology company, on this research.

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Profile picture for maysh47 @maysh47

@pb50 I am APOE 2/3 as well but have enough amyloid & tau with shrinkage of hippocampus to try Lequmbi for amyloid and when trials are over, something for the tau tangles. I suspect the tau protein being inside the neurons is worst than amyloid being outside the neurons, and look forward to that treatment. Feel so lucky having the chance, unlike others in the family who died of Alz, to be treated.🥰

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@maysh47 may I ask how old you are?

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Profile picture for pb50 @pb50

@maysh47 I too am chasing away a profound family history of AD. I am on low dose Lithium Orotate (AMA). Sadly the speed to get to human trials is on a timetable that is slower than I fear disease progression will be. So I am taking the supplement dose of 5mg - and doing anything else I can.

If you aren’t aware, there is a freaking miraculous trial at WestVA U. They won’t take me Because of my APOE4. But they have a process to open the blood brain barrier with targeted ultrasound and put meds directly on plaque/Tau. - and it goes away. But prying open BBB introduces risk of brain bleed.

Here is AI Summary and look for a 60 minutes special on it a couple of years ago

AI
West Virginia University (WVU) has a prominent trial at its Rockefeller Neuroscience Institute (RNI) that uses a combination of focused ultrasound and Alzheimer's antibody drugs. The trial aims to improve drug delivery to the brain to reduce amyloid plaques and potentially slow cognitive decline, and has seen promising results like a greater reduction of plaques in targeted brain areas compared to non-targeted areas.

About the WVU RNI trial

Method: The trial uses focused ultrasound to temporarily open the blood-brain barrier, allowing Alzheimer's-treating antibodies to penetrate more effectively into targeted areas of the brain.

Goal: To accelerate the reduction of amyloid plaques and improve cognitive outcomes for patients with early-stage Alzheimer's.

Progress: Initial trials showed the procedure was safe and successful in opening the blood-brain barrier, and later studies showed an increased reduction of plaques in treated areas.

Next steps: The team is moving into the next phase to further accelerate plaque removal with the focused ultrasound and lecanemab antibody drug.

Collaboration: The WVU team has also been working with West Virginia University Medicine and collaborated with INSIGHTEC, an Israeli medical technology company, on this research.

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@pb50 We watched the 60 minutes episode, these trials are very encouraging.

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Profile picture for pb50 @pb50

@sasham i am pea green with envy for your husband’s gene pairing. A 2/3 is awesome in my book. I have 3/4 and that instance of 4 increases the risk of brain bleeds. I told my neurologist the day may come when I am willing to take the risk - but it’s not today. An instance of 2 improves chances of not developing AD as I understand it.

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@pb50
But the neurologist said he has Alzheimer’s.
His labs through the test say he has plaque. I’m confused on the results.
He said he is positive for Alzheimer’s.

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Profile picture for pb50 @pb50

@maysh47 may I ask how old you are?

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@pb50
Is this infusion therapy a clinical trial? It is being offered to my husband now.

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