Social Worker for Leqembi Patients

LSW_Johnson

Hello! I wanted to introduce myself. I am a social worker at a research hospital that solely works with patients receiving Leqembi infusions. In fact, the doctors I work with were heavily involved in the clinical study/trial and wrote the research articles for how to administer the drug. I decided to join this group as I know there is a lot of questions out there about this drug as a treatment option and sometimes some misconceptions put out there by various medical professionals who don't always know a lot about the drug. I currently have 100 patients on the drug who have been able to continue to live full lives. Please feel free to ask any questions. :)

Mona D

Thanks for putting yourself out here!

My mom had PETscan and confirmed moderate AD. Had lab for genotyping this week. Doc originally suggested Leqembi but is now also considering Kisunla. Sister spoke to doc office so I don't know why he added this drug as an option. Maybe lab related.

Mom, sis and I are all on-board for Leqembi. Just waiting on lab results.

I was already pretty sure that we should proceed with Leqembi but it's scary. I joined a Leqembi FB group which helped me to decide. Much more positive results than I expected.

I realize that everyone will react differently. I saw comments that people noticed a difference after just a few infusions up to as soon as 5 months. Also comments that people are on their 2nd, 3rd, 4th years and are doing well.

What kind of slowing is "normal"?

Will adding holistic treatments interfere?

Thanks for your time!

LSW_Johnson

I always like to tell my patients and their families that if they don't know notice any change at all to how patients feel or changes to their activities of daily living then the drug is working. A decline from mild cognitive impairment to mild dementia which is a FAST scale of 3 to a FAST scale of 4 has been deemed "normal" by my neurologists.

Adding holistic treatments should not interfere with the infusion. Each hospital operates differently on what they allow and don't allow, but I know that my neurologists only ask that patients not be put on blood thinners (i.e. Aspirin, Eliquis, Heparin, etc.)

FAST Scale.pdf

allit

My wife is getting the Leqembi infusions. I’ve posted about it a couple of times here. I think if you just search for my user name you should find them.
So far my wife has had about 6 or 7 infusions. She had to pause for about a month due to some side effects. They didn’t know if it was from the Leqembi or the rivastigmine. Symptoms resolved when both were stopped. MRI and EEG were ok so she just started back up again. Since she’s started them which was only back in October, I haven’t noticed any decline but she really hasn’t been taking for long.