Lecanemab

DMJohnson

Has anyone started or familiar with the latest drug approved last July 2023 - Lecanemab -- What would be the benefit?

M1

Welcome to the forum. There are a few other threads about this drug -also known by its brand name leqembi. You can search for those discussions. It's an expensive drug and difficult to administer, given by IV infusion every two weeks. Significant and serious side effects including brain bleeds, one has to be able to tolerate MRI scans to monitor for this. It seems to work better in younger Caucasian men than in women, people of color, or the elderly. But the upside is that it slows progression of the disease symptoms-by about 30% in the studies. Best results when used in very early disease.

Hope that helps.

forthelove

Unfortunately, after screening, my LO was told he can’t take it as he is apo4/4 and the risks out weigh the benefits.

DMJohnson

Thank you M1 yes everything you have posted I've heard - however, I'm trying to weigh out the benefit - for the every other week travel for infusion - for 18mths (providing my DH can tolerate the drug) he is at the early stage - and 68 years of age. he is eligible - however, he is also at Highest risk for the side effects. It's hard to make a decision.

M1

Yes i can imagine. I'm not sure it's worth it, honestly. I was looking at the manufacturers website recently, and they were explaining that the 30% slowing of the disease seen in the studies translates into about six months of retained function. To me that's a long haul for a short slide. We still have so much to learn....and such a need for prevention.

DMJohnson

https://alzconnected.org/discussion/comment/216524#Comment_216524

M1 - Yes that is exactly what I am thinking - Thank you for your comments. Let's keep fighting and moving forward.

concerned_sister

Is this the proper thread to contribute to IF your loved one starts these infusions?

DMJohnson

https://alzconnected.org/discussion/comment/217270#Comment_217270

I am not sure, this is new to me and I was curious about the decision to start the infusions for my DH. He is approved, However, when thinking about side effects; travel time every two weeks for infusions; the 18th months of medications; for a small benefit; WE have decided NOT to go forth with it at this time. There is more to learn first, and I understand my DH is approved "now" because he is at mild stage - if he moves to moderate stage he won't be eligible. That's the chance we will take. I'd like to state he does have APOE4/4 which makes him at highest risk for the brain bleed side effect.

M1

I would have made the same decision. The delay in progression appears modest at best. I think these early days are better spent on bucket list items if you can. My partner and I took a 25th anniversary trip to the North Rim of the Grand Canyon in 2019 and a month later attended her 60th high school reunion, had a blast on both trips. wouldn't trade anything for the memories of those experiences now.

concerned_sister

I to would agree (not to pursue this) with APOE4/APOE4, as that is the group likeliest to have side affects such as brain bleeds.

With DB he is APOE3/APOE3 etc as mentioned above. One thing I have found worth pondering, is there is a medication under study in pill form that is similar to the infusions. I don't know if I read this on site or elsewhere, but I had read it's approval should be up for review around the end of this year. It seems less costs are likely if it is in pill form. (Our area has many medical centers within a short drive so getting back and forth to an infusion center just wouldn't even make it to my list of pros and cons.) I've mentioned my pros and cons elsewhere. Another pro to ponder is the hope that if this gets slowed down, are there other promising treatments in the future, and would this extend his potential to benefit from them. We'll know more soon. The PET is at the end of this week, and discussion with the neurologist next week. We'll also get a second opinion from the VA neurologist. I'll post back after gathering that input.

Iris L.

CS, did you get a chance to read Larrytherunner's thread about montelukast, since you are asking about other medications?

Iris

DMJohnson

MI - Thank you again for your input. it's so helpful - and yes his GeriPys dr recommended putting our "mindset" on a bucket list trip. (he is NOT interested - I had some dreams of trips to take with him. (we are high school sweethearts, dated at 16 yrs of age; 45 years of marriage and of course, like everyones story the love of my life-and can't even think of this life with him but, yet not with him. We have 4 grandchildren I push for him to spend some time with each week. They are our JOY! and one more on the way - due in January. Something to look forward too. (I am grateful for the few trips we had in our lifetime and reflect on those and just so Thankful for those)

CS looking forward to hearing your results on the pet, etc. Best of luck - an ears open and prayers for a new drug - I know they will keep trying.

I am "thankful" I"ve found this site - you've all been so helpful. Thank YOU not a site we want to be on, if we had a choice. feeling blessed.

concerned_sister

https://alzconnected.org/discussion/comment/218422#Comment_218422

Iris,

I don't remember reading that. I'll look for it in the morning when I'm less tired.

concerned_sister

Thanks. I'm glad you have the new grand to look forward to. Finally spoke to the right VA person to reschedule the consult. When he had to redo the PET scan it conflicted with the standing VA appt. Finally got it scheduled and early Oct. Is the best they could offer. Spent the morning with DB and SIL. We talked about the the private neurologist appt being next week to review his results. We discussed if this dr felt strongly he was a good candidate would he make the decision without waiting on the second opinion. He said it's only a six week wait and he thought that was reasonable to get the second opinion before deciding.

DMJohnson

https://alzconnected.org/discussion/comment/218462#Comment_218462

CS has he made a decision?

Elizabeth607

https://alzconnected.org/discussion/comment/224330#Comment_224330

My husband finished his 16th infusion yesterday. Is it making a difference? I don't know. His Neurologist thinks it is and my husband thinks it is, but I don't know. I know he is not supposed to be miraculously "normal", but I can't determine if it is helping or not without something to measure it by as if he weren't having the infusions. It is the same as it was before electing to have the infusions. So, maybe that is the plus. He is not yet started a significant noticeable decline. Don't get me wrong, everyday is still frustrating to some extent and he is unable to do anything on his own 100% except for ADLs. A change in his ADHD medicine made a difference….. for about a month….now that once alertness seems to have vanished. Regarding the other cons - taking him to the infusion center every two weeks is not an issue and he has no evidence of brain bleed according to the 4 MRIs he has had.

M1

Elizabeth I’m glad you’re reporting your experience. Lack of decline is probably the best you can hope for- none of the studies showed improvement, just lack of decline by about 6-8 months over the course of the studies.

ImMaggieMae

Someone close to us has been undergoing treatment for about 6 months without any problems so far. They are still traveling and leading what seems to me to be a normal life. He still has early Alzheimer’s but is doing well with the infusions. I haven’t seen him since the infusions started but according to his wife he is doing well. They just have to home in time for infusions and any scans or tests. The hope is that it will delay the symptoms enough that new drugs will become available that he would be able to take advantage of.