Lequembi for Patients with two Copies of APOE4 Gene

wolfga

I understand that the risks associated with Leqembi increase significantly when the patient has two copies of the APOE4 gene. Is there anyone in this category taking Leqembi, or is the associated risk too high?

M1

Welcome to the forum. We still have very few participants taking Leqembi, if any. Several have made inquiries, but I don't know of any reports back of anyone taking it. The difficult logistics and the high risk have deterred most I think.

Someone posted a newspaper report a few weeks back, the number of people taking this drug over the entire country over the first six months is really quite low for a new drug--maybe 30,000-40,000 overall if I remember correctly. They expected the number to go up over the next year, but the uptake has been pretty darn slow.

Correcting myself: here's the link to the article. 2000-3000 overall over the first six months. My memory was off by a factor of 10!!

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

PJ52

DH has the APOE4 gene, is in MCI stage, and after several weeks of discussion with family (many of whom are medical professionals), as well as with his neurologist, we have decided he will receive Lecanemab treatments. He will be his neurologist’s fifth Lecanemab patient with APOE4, and one of 80+ patients overall. He does not fear the risks, including death. What he does fear is progression of a disabling disease. But we are optimistic and also have a strong faith. The risks diminish or even disappear after six months of treatment (which is still a long time). There is a different type of treatment being developed by Alchezon, in pill form and with no side effects, that might be approved late this year. If so, he can switch to that or add it to the Lecanemab. We are currently just waiting for all the paperwork to be processed and to be scheduled for treatment. I just joined the Lecanemab treatment group on this forum and hope to post our experience there.

amycohen

> @PJ52 said:
> DH has the APOE4 gene, is in MCI stage, and after several weeks of discussion with family (many of whom are medical professionals), as well as with his neurologist, we have decided he will receive Lecanemab treatments. He will be his neurologist’s fifth Lecanemab patient with APOE4, and one of 80+ patients overall. He does not fear the risks, including death. What he does fear is progression of a disabling disease. But we are optimistic and also have a strong faith. The risks diminish or even disappear after six months of treatment (which is still a long time). There is a different type of treatment being developed by Alchezon, in pill form and with no side effects, that might be approved late this year. If so, he can switch to that or add it to the Lecanemab. We are currently just waiting for all the paperwork to be processed and to be scheduled for treatment. I just joined the Lecanemab treatment group on this forum and hope to post our experience there.

Hi PJ42,

I'm new to this forum. Has your husband started lecanemab? My mom has the two copies of the APOE4 gene and we are in the process of trying to get her on lecanemab.

PJ52

Hi, Amy. He starts in two weeks. I wish now we had made the decision earlier, because the earlier in the disease Lecanemab is used, the better the result. Good luck with the process. I just read that so many are now starting Lecanemab, the clinics may soon reach capacity.

wolfga

https://alzconnected.org/discussion/comment/200495#Comment_200495

Was this one APOE4 gene or or two? Thanks for your feedback!

PJ52

Hi, wolfga! He has two copies. Sorry for the un-clarity. 😄

etjames

My mom has the E3/E4, which I understand to be two E4 alleles. She started lecanemab last October and all of her MRIs have been clear of bleeds. But she is declining significantly in the past few months, and it’s a difficult decision to make whether to continue. The risks with the double E4, the time commitment and insurance hoops to jump through, but the fear that it could be worse if she wasn’t on it. It’s a tough spot to be in. The feedback I get from the doctor is that it’s most important to keep going, that her results are helping future patients, etc. But I worry that I’m sacrificing her quality of life by continuing a drug that’s possibly ineffective or even harmful for her.

SherryRS

my DH is receiving his 7th infusion as I type this. His MRI has shown some brain swelling. We are meeting with his neurologist tomorrow to discuss results of most recent MRI and to decide whether to continue with infusions. I hope we will be able to continue.

SherryRS

let me add to my previous post that my husband had shown no other reactions to the infusions and continues to be in good spirits.

Mollykazoo

My husband has the E3/E4 combination of genes. He just had a lumbar puncture last week to confirm his amyloid count and should have his first Leqembi infusion sometime this summer (we haven't gotten a date yet). Before the lumbar puncture, a few months back, my husband had a blood draw to estimate his amyloid levels and because they were still pretty low (just over the threshold to determine AD), the neurologist explained that the risk of brain swelling and bleeds was somewhat reduced compared with a person who had a very large volume of Amyloid for the Leqembi to attack. I'm still learning and I'm not sure if this feedback is helpful.

Best of luck to all of us! I'm hoping this extends my young husbands time with us.

PJ52

My husband’s MRI after his 4th infusion showed >5 microbleeds. Treatment was paused. Follow up MRI a month later was worse - severe ARIA-H and mild ARIA-E. Thankfully, he’s had no symptoms and no cognitive changes. No more lecanemab. We are now waiting for approval of Alzheon’s tablet, which could be approved by the end of this year.

PattiRN2

My DH has 2 copies of APOE4 allele. His neurologist at PENN stated the risk was too high and ruled us out. I don’t know the right answer. I understood the infusions to be every-other-week at a center for over a year with no guarantees. My DH did not want to risk a head bleed, but we fully support those who feel differently. We did participate in research studies with the hope it helps the next generation.

Lux

https://alzconnected.org/discussion/68332/lequembi-for-patients-with-two-copies-of-apoe4-gene

Hi, I'm new to this forum but have some info on this. My husband just moved into early dementia after a prolonged bout of Covid. We saw a Yale neurologist who finally was able to get a PET scan for us, the diagnostic that opens Lembequi. It's scheduled for Sept. My husband will take the genetic test if the results are AD. Which we're pretty sure will happen.

Lembequi results are early days. It took Yale till March this year to set up the infusion centers, so people, about 50 patients, have only been on the med for 5 months. The neurologist had no positive results to report so far, but of the 50, 2 had brain swelling (I believe they have to stop), one had seizures, and one died of massive brain bleeding. That's 5 in 50, or 8% with problems. Not great, I'd say. Anyway, our neurologist said the placebo group didn't do that much worse than the trial group.

With the lifestyle challenge, every two weeks, and MRIs every 3 months, I think we are going to skip Lembequi and wait till the once-a-month Eli Lilly drug (is it Kisunla?) comes online. Probably middle of next year, if the first rollout is an example. And if we're still in a place where it might make a difference, and if our insurance is willing to pay for the drug (a big if—the Yale guy says they still think this might be too experimental), we might give it a try.

Right now, though, we're going on as if there is nothing but exercise mental and physical, diet and being with people, having fun while we can.