Lequimbe

C_M_D

Hello. I'm new to the group and I'm hoping for advice and information as I navigate this new life with my LO. A year ago at 59, he was diagnosed with MCI. This has been going on for four years now, and in the last six months it seems to be progressing quickly. The dr wants to start him on Lequinbe but he hasn't had a neuropsychologist test, and I'm afraid this is much farther along than MCI (the drug is only give in the early stages of the disease). Has anyone had experience with this drug?

Thank you!

M1

Welcome to the forum. More and more new folks are coming in with stories similar to yours and being offered the new drugs, but I'm not aware that many have actually enrolled. I think there is a lot of worry about the potential serious side effects, and much practical concern about the challenging logistics of taking someone with dementia for biweekly IV infusions that they won't comprehend or cooperate for.

C_M_D

https://alzconnected.org/discussion/comment/194158#Comment_194158

Thanks. Yes, from the response here, it looks like there hasn't been many who have tried the drug.

PJ52

I, too, have been searching for others who have used it. We are struggling now with making the decision about starting lecanemab (Leqembi) treatment. The statistics show high risks for little benefit. And DH has the genotype APOE4, which increases the risks. But is otherwise a good candidate since he is in good health and early stage.

ImMaggieMae

We have a friend whose husband is a few months into Leqembi infusions. He has early stage Alz. He hasn’t had any problems so far and since it’s early in the disease he seems to be well aware of the logistics. I know he had to go through a lot of testing and scans before the treatments started and being approved. He and his wife both have a positive outlook.

aconite

An interesting but somewhat technical article. https://www.hcplive.com/view/monoclonal-antibodies-may-cause-serious-harm-patients-alzheimer

Anna2022

My DH was offered the new drugs but he refused. He has no insight into his illness (anasognosia) but also the administration of the drug/s requires so much from both of us (IV infusion every other week until it no longer delays progression, plus labs on a regular basis). There is no way that I could convince DH to present for this, he would forget the why and argue each time. It would be a fight and a scene every time.

This has been our decision. You must decide what's right for your family!

BadMoonRising

I'm curious. Why Leqembi? There are two other amyloid busting drugs, neither of which require 2x month infusions. Also, if your father has 2 copies of the APOE4, I doubt he would be allowed to receive the drugs.

If he has only 1 copy of the APOE4 gene...I bet they would allow it.

C_M_D

https://alzconnected.org/discussion/comment/195854#Comment_195854

What are the other two drugs? Thanks.

Larrytherunner

I believe lecanemab (Leqembi) is the only amyloid-beta reducing treatment available now. Aducanumab (Aduhelm) was the first FDA approved treatment but it's effectiveness was not proven and it may no longer be available. Bad Moon may be referring to treatments that may be approved in the next few years.

As far as having two copies of the APOE4 gene (APOE4 homozygote), the latest article in Alzforum indicates that this is a risk factor for a bad outcome when undergoing Leqembi treatment.

https://www.alzforum.org/news/community-news/brain-woman-who-died-leqembi-shows-worst-case-scenario

ImMaggieMae

There is apparently a demand in some parts of the country for the treatment.

https://www.alzforum.org/news/community-news/rising-leqembi-prescriptions-are-straining-clinic-capacity

M1

Thanks Maggie, very interesting article. That's still glacially slow use for a new drug: only 2000-3000 patients nationwide six months after approval. Other important points-about half of non-Medicare insurers are still denying coverage (bad new for early onset victims, since Medicare doesn't kick in for SSDI recipients right away).

ImMaggieMae

https://alzconnected.org/discussion/comment/196160#Comment_196160

I thought that number seemed low too, but in the case of the friend who is receiving the drug, approval and all the red tape moved glacially slow as well. It was well over 8 months of tests and more tests, trying to get insurance approval, etc. before the infusions actually started. I’ll be interested to see the numbers 6 months from now.

AnderK

Last neuro appointment I asked about lequimbe since I wasn't sure the aricept was doing anything. She was very strongly against it. Felt it hadn't been tested enough, that the value was questionable, that the side effects were huge. There is more that she said, but my notes are two floors down, ant it is almost midnight. How lazy is that, hmmmm? Kathy

jfkoc

Here are 2 interesting articles;

5 Things to Know About the New Alzheimer’s Drug, Leqembi  - Fisher Center for Alzheimer's Research Foundation (alzinfo.org)

What to Know About Leqembi, the Alzheimer’s Drug Approved by the FDA - The New York Times (nytimes.com)

Mzerah

> @PJ52 said:
> I, too, have been searching for others who have used it. We are struggling now with making the decision about starting lecanemab (Leqembi) treatment. The statistics show high risks for little benefit. And DH has the genotype APOE4, which increases the risks. But is otherwise a good candidate since he is in good health and early stage.

The problem is, in my husband case is that he is homozygous for Apo E4 ,so if you know how many Apo E 4 gene you have it can help you decide. Some experts don't want to treat 2 genes which is what my husband carries unfortunately. I am an MD and find it hard to decide between 21 % possible improvment and delay and 40 % risk edema hemorrage.

Mzerah

to jfkoc
you explain the issues pretty well but you also are purchasing shares, that makes me feel that you have a bit of an ethical issue. ARE YOU AN MD? OR REPRESENTATIVE FOR THE DRUG? PLEASE ANSWER HONESTLY.
I am an MD and I have a bit of concerns about giving it to my husband who is homozygous (with 2 Apo E4 genes). Homozygous are at much more at risk of bleeds and edema for a small delay only in progression. Pharma is a big business and drug is quite expensive. The benefit risk ratio seems poor but he is in good health otherwise no diabetes, no Hypertension only lovastatin and memantine. I have read a lot about the trials and the phase 3 and cannot make up my mind especially because we live far from big medical centers and not sure the radiologists here would know how to read his MRI.
Does anyone in a group knows their ApoE 4 status and is homozygous with the gene on leqembi?
Can you share your experience or that of your affected loved one!!!

> @Mzerah said:
> > @PJ52 said:
> > I, too, have been searching for others who have used it. We are struggling now with making the decision about starting lecanemab (Leqembi) treatment. The statistics show high risks for little benefit. And DH has the genotype APOE4, which increases the risks. But is otherwise a good candidate since he is in good health and early stage.
>
> The problem is, in my husband case is that he is homozygous for Apo E4 ,so if you know how many Apo E 4 gene you have it can help you decide. Some experts don't want to treat 2 genes which is what my husband carries unfortunately. I am an MD and find it hard to decide between 21 % possible improvment and delay and 40 % risk edema hemorrage.

> @Mzerah said:
> > @PJ52 said:
> > I, too, have been searching for others who have used it. We are struggling now with making the decision about starting lecanemab (Leqembi) treatment. The statistics show high risks for little benefit. And DH has the genotype APOE4, which increases the risks. But is otherwise a good candidate since he is in good health and early stage.
>
> The problem is, in my husband case is that he is homozygous for Apo E4 ,so if you know how many Apo E 4 gene you have it can help you decide. Some experts don't want to treat 2 genes which is what my husband carries unfortunately. I am an MD and find it hard to decide between 21 % possible improvment and delay and 40 % risk edema hemorrage.

MaryMN

My DH will get his 17th infusion of Leqembi tomorrow and except for having body aches and chills after his first infusion, he has had no side effects. Follow up MRI's have all been negative for any brain bleeds, which is the main worry with Leqembi.

He was diagnosed with MCI over a year ago but it took several months to get confirmation through a PET scan that it was due to Alzheimers. Being very early in the disease, we both felt that any chance to slow the progression was worth the risk. If future MRI results would be concerning, we will reevaluate at that time.

We live only 15 minutes from the infusion center. From walking in, having the infusion, and walking out, he is there for only slightly more than hour, during which time he is able to read, chat, or take a catnap. It really is not a major inconvenience and at this point, he is more than willing to try anything to stave off this dreadful disease for as long as possible. And who knows what medical breakthroughs may occur during the time he is able to maintain his current cognitive abilities?

PJ52

https://alzconnected.org/discussion/comment/234040#Comment_234040

That’s wonderful! Wishing you all the best.