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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.

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celia16 | @celia16 | Feb 22 8:42am

Ref. Cerefolin supplement….since it contains Vitamin B12, I’d get a blood test for B12 level before taking it. Once you take it, your actual B12 level can be skewed. The reason that’s important is that a B12 deficiency can cause cognitive decline and if that’s the case, you’d want to know.

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doylesely | @doylesely | Mar 20 11:17am

our brother in law has mci alzeiheimers (diagnosed) and is on loquembi. He for the moment has no plaque; we wonder if anyone has stopped taking the loquembi and what the impact of stopping the drug has been. Thanks.

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badlandsgirl | @badlandsgirl | Mar 20 12:50pm

My husband was on Leqembi, every 2 weeks for 2 years. His centiloid value decreased from 78 to 3. He has declined slightly cognitively. The doctors say the studies show that he would not benefit from receiving Leqembi any longer. His last infusion was January 27. I can see the changes cognitively, I don't feel it's from stopping Leqembi, I believe it's just where we are on our journey. At this point we are in search of drug trial that we might qualify for. We will not give up and let this stupid disease win without a fight. We have hope 💜🙏

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kjc48 | @kjc48 | Mar 21 10:16am
In reply to @celia16 "Ref. Cerefolin supplement….since it contains Vitamin B12, I’d get a blood test for B12 level before..." + (show)
Profile picture for celia16 @celia16

Ref. Cerefolin supplement….since it contains Vitamin B12, I’d get a blood test for B12 level before taking it. Once you take it, your actual B12 level can be skewed. The reason that’s important is that a B12 deficiency can cause cognitive decline and if that’s the case, you’d want to know.

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@celia16 My husband is on Cerefolin too along with lequembe infusions.

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maureenfromoregon | @maureenfromoregon | Mar 21 10:44am

I had my 5th infusion yesterday. 75-year-old female. Diagnosed with Alzheimer's about 2 years ago.

I'd be happy to be in touch. Maureen

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badlandsgirl | @badlandsgirl | Mar 21 11:29am
In reply to @maureenfromoregon "I had my 5th infusion yesterday. 75-year-old female. Diagnosed with Alzheimer's about 2 years ago. I'd..." + (show)
Profile picture for maureenfromoregon @maureenfromoregon

I had my 5th infusion yesterday. 75-year-old female. Diagnosed with Alzheimer's about 2 years ago.

I'd be happy to be in touch. Maureen

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❤️

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dells3 | @dells3 | Jun 25 1:31pm

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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lbk1962 | @lbk1962 | Jun 26 11:12am
In reply to @ret2tus "My husband was diagnosed with Alzheimer's after a spinal tap last fall found amyloids in his..." + (show)
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My husband was diagnosed with Alzheimer's after a spinal tap last fall found amyloids in his brain fluid. So he was eligible for Leqembi and began infusions in December. However, after just six infusions over three months, he decided he didn't want to continue. To him, the risks involved seemed to outweigh the very, very slight benefit (perhaps a 5-month slowing of the disease over a couple years). Plus, an MRI is required after every few infusions to make sure there isn't any brain bleeding. Finally, to anyone considering Leqembi, make sure about your insurance coverage first, as it's very expensive. We were lucky because Medicare and our supplemental Blue Cross/Blue Shield covered everything.

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@ret2tus can you please help me understand what “ perhaps a 5-month slowing of the disease over a couple years).” means?

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lbk1962 | @lbk1962 | Jun 26 11:18am

Husband, 67 just got diagnosed and we are waiting on lab results for bloodwork to determine which drug he is able to take. Any advice for a person in shock with a husband in denial?

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ret2tus | @ret2tus | Jun 26 2:00pm
In reply to @lbk1962 "@ret2tus can you please help me understand what “ perhaps a 5-month slowing of the disease..." + (show)
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@ret2tus can you please help me understand what “ perhaps a 5-month slowing of the disease over a couple years).” means?

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@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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