Hi. My sister in law was diagnosed with early stage Alzheimer’s a few months ago. She’s had 3 infusions of Lequembi, two weeks apart. Is it possible that one minute she’s having a totally lucid conversation with her spouse and me and the next minute she’s asking when she’s going back to the city she lives in, when we are only a few blocks from her home? Could it be from the drug, or is that normal for early stage Alzheimer’s?
Lequembi is specifically approved for Alzheimer's. If in fact your SIL is suffering from another kind of dementia, I am not sure if this expensive drug is useful for her.
Best wishes to you.
I would say normal but it could also be a side effect of the drug.
Mom had alzheimers for close to 20 years and in early on years she could be very lucid but then confused several hours later.
There are a lot of unknowns about the alzheimers drugs.
I'd be interested in you updating us down the road.
Lequembi is a mab.....a monoclonal antibody. With that type of drug, the user enters the Wild West as far as side effects go. The doctors administering them have no idea what may happen! The hospitals have no idea how to treat the side effects, especially when the BRAIN is involved!
I'll give you an example. I was given a mab.....Remicade.....in an effort to calm my immune system down after immunotherapy (another mab) nearly wiped out my vestibular system. The Remicade caused SEVERE floaters to appear in my eyes that still haven't gone away, nearly 3 yrs later. Nobody knows why, either, it wasn't on The Extensive List Of Possible Side Effects of Remicade. When I told the nurse my entire field of vision was FILLED with thousands of black floaters, she told me they were "just stabbing in the dark" to try to help me. That particular Stab In The Dark cost me some of my vision, permanently.
I suggest your SIL reconsider being a guinea pig for yet another Stab in the Dark mab that may cause her more side effects than it cures. To date, there has been NO CURE for Alzheimer's and no known medication to slow it down, either. If this mab further destroys her already compromised brain, then what?????
Don't take these types of infusions lightly. NOBODY understands how medications are going to work that are intended to ramp up ones own immune system! Only if a person has been given a few months to live with a metastatic cancer diagnosis should they take the risk, imo, as someone in that very position has done. Yes, the mabs saved my life for now, but at a very high cost of permanent disabilty and no relief FROM them. Brand new treatments with THESE possible side effects are way too risky to undertake, imo.
AD is and always will be a brand new cognitive situation hour to hour.
Best of luck to your SIL
This via the internet which will give you reams of information on the drug, one used to treat amyloid plaques in early Alzheimer's disease.
Whether or not this could be a result of TAKING this infusion would be a question for the Medical team, and the truth is that even they may not know. If the symptoms you suggest occurred WITH the taking of this drug, and prior TO taking it, this relative was ALWAYS without any cognizant speech, but NOW has episodes of rationality --it sounds like some improvement to report to the medical team and to discuss with them.
This is a newer drug, one that is enormously expensive. This drug won't be administered without follow-through and follow-up I would think.
I hope you will discuss and will update us what the best guess are. Sadly, with Alzheimer's almost EVERYTHING is best guesses.
"That kind of fluctuation — being clear and oriented one moment, and then suddenly confused about where she is — can, unfortunately, be typical of early Alzheimer’s. People in the early stages often have “good days and bad days” or even “good hours and bad hours.” Their ability to recall or stay oriented can vary depending on fatigue, stress, time of day (especially late afternoon/evening, known as sundowning), hydration, or other medications.
HOWEVER, since she recently started Leqembi (lecanemab) infusions, it’s also wise to consider potential side effects or interactions:
Leqembi can cause brain swelling or small brain bleeds (ARIA-E or ARIA-H) in a small percentage of patients. These can sometimes lead to temporary confusion, disorientation, or behavioral changes.
The onset of these symptoms doesn’t necessarily mean the drug is unsafe for her, but it does warrant evaluation — especially if the confusion seems more sudden or pronounced than before.
What to do:
Contact her neurologist or memory care specialist promptly and describe the pattern — how often it happens, how long it lasts, and when it began relative to her infusions.
Ask whether an MRI is needed; MRIs are routinely done to monitor for ARIA in patients receiving Leqembi.
Keep a simple daily log of her mental clarity, sleep, meals, and infusion dates. This can help the doctor see whether the confusion correlates with the treatment schedule."
I hope this helps!