Leqembi

Maru

Just feeling blue this morning. Neurologist offered Leqembi infusions to DH with ALZ. DH is 90. It's 18 months of every other week infustions that will only delay the inevitble by months, not years, and if he does't have a brain hemmorage or stroke there are high odds of migranes and other side effects. We opted not to do them. Somehow, I feel like a door just slammed shut. He couldn't tolerate any of the other meds, so that's it. Not looking for answers, or even sympathy as far as that goes. I just need to put it out there. I am sure that others have had to make similar tough decisions.

He probably shouldn't have even been offered Leqembi as he is already showing signs of dementia.

harshedbuzz

@Maru

I'm sorry.

One of the hardest parts of caregiving for me is making life altering decisions on the behalf of another adult. It sucks whether that person is the spouse with whom you previously discussed weighty decisions or a parent you'd once looked up to for guidance in such matters.

From what I've read of the new infusion medications, they seem to offer the rosiest outcome to younger men. Older people, women and POC don't tend to respond as well. A good response is an additional 6-8 months in earlier stages.

HB

midge333

I am sorry there are no effective treatments for your DH. That said, he is 90 years old which is 14 years past the median life expectancy for a male in the USA. Glass half full or half empty? I would say your DH had a pretty good run!

Shan456

My DH made that same choice.

When he received his diagnosis after months of testing (Early Onset Alzheimer’s), he was offered Leqembi. He has always had strong feelings against taking medications, so he told the Neurologist he’d think about it. She said if his answer was yes, to see her in two weeks. If his answer was no, to see her in 3-6 months. We did research Leqembi, and he decided not to do it (side effects vs. benefit). So here we are, just living with the impending decline of every aspect of our lives.

I will mention what else the Neurologist said we could do besides meds:

• Eat healthy, try the MIND diet or Mediterranean diet
• Take 500mg of B-12 vitamin daily
• Exercise
• Be social
• Keep brain active with hobbies, etc.
• Work at a more easy-going job as you are able
• Get a wall or desk calendar
• Install a tracking app on phone

And for daily living and coping strategies, I'm learning from the Alzheimer's Association online forum and in-person support group.

LBC83

I'm one of those who chose to start on Leqembi. I recently had my 29th infusion. I have had zero infusion-related reactions and zero reactions to the Leqembi. For me, a Leqembi infusion is like drinking a glass of water: no noticeable impact. But I have the knowledge that the Phase 3 clinical trial for Leqembi showed the drug successfully cleared amyloid below the desired threshold in 54% of the participants at 12 months and 68% at 18 months. That is the key point of the drug.

I have been listening in on the Alzheimer's Association International Conference now going on in Toronto. Yesterday, Dr. David Weisman (MD) at Abdington Neurological Associates in Abdington, PA gave a presentation titled "Real-World Use of Leqembi in Patients with Early Alzheimer's Disease in the United States: A Case Series Review".

He reported the mean treatment duration at his clinic was over a year with 87% of the patients remaining on Leqembi (i.e. not a lot of people dropping out). In terms of cognition, they found about 84% of the patients on Leqembi at their clinic either remained cognitively stable or improved over this timeframe.

GNGR

https://alzconnected.org/discussion/73592/leqembi

https://alzconnected.org/discussion/73592/leqembi

I had asked for lequembi as a possible treatment for my husband last year when I read an article in the AARP showing promise for results in delaying symptoms. I was told by his neurologist he wouldn't qualify as he was "too far along " in the disease. I TOTALLY disagreed, he had only been diagnosed with MCI the year prior and was showing some signs of memory loss typical forgetting things and slower to do tasks he would have done without batting an eye before, but without and diagnostic testing I wasn't willing to accept a doctor saying to me…oh he has early alzheimers. A year has since gone by and we have gone through many new tests that are FDA approved, the Tau blood test that shows if he actually has the plaques in the blood a spinal lumbar puncture to diagnose the levels of plaques he has in the brain which is a guideline for "early Alzheimer's" diagnosis and then possible treatment with lequembi. SO after a year of advocation and testing we finally have the Early stage Alzheimer diagnosis. He is on the two meds everyone perscribes, memantine and donepizel but as we know there is NO cure and these meds only offer hope for keeping it at bay so to speak. That being said we looked into getting lequembi ( although I don't think we would do it because of the risks as you stated) the COST is what also added to the decision to Not proceed. Insurance would only cover 50% and we could not afford the 13,000 a year copay. We are presently in a blind study for an oral medication which he has been taking for several months, but won;t know if it is placebo or real until April. I can sympathize with you in feeling a door closed. There are no cures and we are left with the uncertainty of how our loved ones will progress in their diagnosis as each patient is different, the fear and worry can be overwhelming when you have no one to share with.

I know of a patient that took lequembi for only 6 months and her results were remarkable. She was tested as better than baseline from when she was diagnosed. That's encouraging.

Good luck to you.

G

trottingalong

https://alzconnected.org/discussion/comment/249063#Comment_249063

https://alzconnected.org/discussion/comment/249063#Comment_249063

That’s wonderful to hear about your success on Leqembi. It’s rare for us to hear directly from someone actually going through the treatments.