Leqembi infusions

Here’s an article that was shared by @Crushed, which was released last October about some of the issues with the Leqembi trials.

What Drugmakers Did Not Tell Volunteers in Alzheimer’s Trials

From that article, “Early last year, the Food and Drug Administration approved Eisai’s Alzheimer’s drug, marketed as Leqembi, saying its modest benefit — a slight slowing of cognitive decline for a handful of months — outweighed its risks.”

It appears that this drug only adds about 6 months or so of a slower decline if given early in the disease’s progress and women/people of color are more likely to suffer from the side-effects, which include brain bleeds.

As @jfkoc suggested, please do some researching online regarding this drug.

I haven’t found much of value doing a google search. All I find are sponsored links from the makers, high-level overviews of what the drug is supposed to do, and a story or two from hospitals showing their first recipients. I’m not finding what I’m looking for, which is feedback from patients. I’ve only found those here on ALZConnected. Even then, there’s not much. South Dakota Dave has several very helpful posts about his experience. There are a couple of posts with a scathing NY Times article, and another couple detailing bad experiences.

My ADLO is opposed to the infusion therapy. I was gung-ho, but the dearth of positive experiences, the risk of complications (some extremely serious, even fatal), and a best-case scenario of “well, you’re not getting worse” for a few months is making it very hard to present a compelling case. I’m not sure I’m on board with them.

My DH and I were hopeful about this treatment, but by the time all the required testing and exams were completed, he had declined so much he was deemed ineligible. Neurologist instead suggesting a lumbar drain trial to screen for possible normal pressure hydrocephalus…which he just completed. Unfortunately, there was only minimal change in his symptoms; so, I think we’re done with testing and just back to a day at a time. I hope the treatments prove to be helpful for you.

I posted this comment on another conversation string, but it seems to fit better here.

My DH was diagnosed with MCI due to AD six months ago. He is APOE4, likely to have the most risk of side effects with Leqembi. We’ve been in conversations with neurologists and doing research on our own. We're leaning toward turning down Leqembi, but it's a very tough decision.
My husband has a different rare disease that recently required infusions once a month for six months. We learned a lot from that experience. Though his medications had no negative side effects, getting regular infusions was physically and emotionally difficult. His veins developed scar tissue after only four infusions making it increasingly difficult and painful to find the vein. Each infusion took over 2 hours (plus drive time and wait time) requiring doses of steroids and Benedryl to ease reactions to the drugs. We understand these extra measures are common for patients on Leqembi too. The thing that kept us going was measurable, positive results. Blood tests showed us exactly when he went into remission.
Now, faced with this decision, it’s very hard for us to imagine eighteen months of infusions every 2 weeks, plus several MRI scans, and the risk of dangerous side effects - with no measurable results. The studies show the median amount of time Leqembi slows AD is six months, but there’s no way to detect or measure results for any one individual. He won’t feel any better. The AD will still progress. Even if they could guarantee my husband the extra six months, he’d pay for those months with eighteen hard ones.
My husband is extremely physically fit. His AD symptoms are very mild. We want to guard his quality of life now, while he’s at his best and can enjoy it.