Newly Diagnosed - Infusion Therapy?

LisaUH

Hi all, I am new to this group and am excited to learn from everyone! My Mom is 85 and recently diagnosed with "early stage" alz. The Neurologist is wanting an updated MRI, but feels that she is a good candidate for infusion therapy. Has anyone has experience with this?? She does very well (still drives and volunteers at church), but there are clear signs her memory and reasoning is not great.
Please let me know if anyone has had success with the infusion, and which drug.
Thanks!

M1

Hi Lisa. You're probably talking about leqembi. Results in older women have not been great so far. At 85 Id be hard pressed to put her through it. I don't think we've had anyone in her age group get treated with it yet.

Driving is a hot button topic here. You should put on your radar to potentially find other means of transportation for her. Not what you or she probably wants to hear, but better safe than sorry. At the very least, examine her car for unexplained dents and dings, and consider a formal driving evaluation.

Marta

Be aware that study participants who did well in the phase 3 trials with Leqembi tended to be healthier (outside of AD), male, and younger. Although people up to age 90 were eligible, you would want to consider what her life expectancy is at 85, without the infusions. People at age 85 can expect to live to 90. The average duration of AD in the general population is 3-11 years, surely towards the shorter end for someone 85 years old, even if they have no other serious medical conditions.

These are tough choices.

harshedbuzz

I'm starting the evaluation process with my own 86-year-old mom. Having been down this road with my dad, we were excited when Leqembi was initially approved. Further reading, including some perspective from a few of the specialists my dad had seen at the memory center left us both thinking it wasn't something in which we were interested.

The benefit, especially to women and POC, doesn't seem to be as great it is for younger, healthier white men. And the risks (brain bleeds, brain inflammation), inconvenience (an infusion every 2 weeks plus regular imaging to identify problems) and the costs (copays are close to $7000 yearly for the medication plus copays for the additional testing) all seem to negate the minimal benefit to the PWD.

https://www.nytimes.com/2023/07/06/health/alzheimers-leqembi-medicare.html?unlocked_article_code=1.vE0.B8o1.78q0ojlvnGPp&smid=url-share

HB

jknyc

I am new to ALZ but am constantly reading about options to slow down ALZ which I am dealing with (early memory loss stage doctors tell me). These four May 2024 discussions and comments are very useful and thoughtful. How about each of you telling us how you are feeling about these infusions 18 months later?

I am working hard to understand the pros and cons of Legembi and Kisunla. My big concern is what one of you said: you may live a bit longer but the quality of life could be decreased as you go to the doctors frequently and get MRIs or Pet Scans done frequently, and spend time worrying about the choices you make. My doctors make the case that anything that helps slow amaloid is worth it because you want to be at a mild memory loss stage if and when a really effective drug is found.

SDianeL

https://alzconnected.org/discussion/comment/256764#Comment_256764

welcome. I believe you will get more replies if you post a new post. Use the plus sign at the bottom of the page. People who posted in 2024 may no longer be posting here. You can also search all old posts for the infusion drug names and find more info. The search thingy is at the top of the page. The infusion drugs have side effects that need to be considered. Some cause brain bleeds. Many feel that the infusions only delayed progression by a few months. Some did say their LO was more focused.