Leqembi infusions

zarzycpp

Have your persons been doing Leqembi infusions? Has it helped? What can you tell me about these infusions.

jfkoc

I suggest you do some google…there is a lot of info there…

Phoenix1966

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.

South Dakota Dave

I was diagnosed with Alzheimer’s in April 2024 and decided to try Leqembi. Local Dr.’s failed us, so we decided to drive 635 miles to the Mayo Clinic in Rochester MN and stayed there a week. I and my wife found it the best thing we ever did. If we need help, our Mayo Dr’s will react quickly when needed.

I was one of about 14 Alzheimer’s patients at Mayo. The required infusions started on January 2024; this January 2025 I now have 27 infusions each following two weeks apart, each one is in a hospital and completed in about 2 ½ hours.

Recently, we heard of a new FDA approval scheduled for Leqembi that will be sometime after August 2025. I am much more hopeful now because we find Eisai (the owner) Leqembi has already been using their subcutaneous (SC) injector with Leqembi which gets us out of the infusion center every other week into a new at-home procedure to administer Leqembi much faster and significantly less costly and is showing the SC formulations resulted in 14% greater amyloid removal! I believe that has never been done.

It may be helpful to know that anyone that has Medicare, I’d suggest getting a good health supplement also. Reason: Medicare pays for Leqembi (great!) but the required infusions are not covered. In my state (South Dakota USA), the cost for that is about $1600 each month. BUT our supplement insurance covers it 100% with only a $190 cost each month.

We’ve learned a lot from the 27 infusions and would be glad to help with any questions or concerns about Leqembi.

We really need more Leqembi patients to demonstrate its capabilities!

PoppyBevo

https://alzconnected.org/discussion/comment/233287#Comment_233287

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.

Sitemsek

If this is the infusion treatment my wife's neurologists recommended, we turned it down. The risks seemed far too high for such little chance of benefit. Risks included 25% of participants experienced brain bleed or swelling and 5% actually died from it. With only 38% seeing any benefit we didn't want to take the risk. Each person needs to make their own informed decision.

starwood

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.

zarzycpp

https://alzconnected.org/discussion/comment/234676#Comment_234676

https://alzconnected.org/discussion/comment/234676#Comment_234676

Dave, so after 27 + infusions , has Leqembi improved your condtion. We're waiting to hear back from medical team , when my DW can start the infusions. I still worried about the side effects for her. How many more infusions are you going to take - is it forever?