Early Onset

Hi Maryann I am 55, haven't been formally dx with Early-onset Alzheimer's disease but I recently December 5th had an MRI shows numerous white matter hyperintensities/white matter disease in periventricular and subcortical regions of my brain. Worse than previous MRI less than 2 years ago. Neurologist ordered me to have a PET Amyloid scan
It is upsetting for me. I am alone, never married, no children. I have a sweet Papillion dog under 2 years old. I mostly experience the behavioral symptoms. Major Depression and anxiety. But also had other neurological symptoms since late December 2022. My main support has been my Psychologist, meets 3 times a week for majority of the almost and a half years I've been meeting with her. I am afraid of being dx with EARLY-ONSET Alzheimer's
I become overwhelmed by even minor issues..easily irritated and agitated. I don't think my life being so isolated has helped me..probably contributed to this disease
Worried I won't be able to join a clinical trial for drug to remove Amyloid plaque deposits because so many of these things require patients to be older usually in their sixties.


Kristin
Kristin

Sorry to read about your AD diagnosis. I know it is hard, but try to keep your spirits up, and enjoy each day as best you can.

I'm 63 and was diagnosed with MCI about a year ago. There are lots of postings for those with AD over in the "I'm living with AD" forum in the AlzConnected website at the link below.

Specifically, you may be interested in the thread titled "Treatment with Lecanemab (Leqembi)"

There are currently two FDA-approved drugs for slowing the degradation associated with AD: Leqembi and Kisunla. Clinical trials showed they both slowed the disease progression by almost 30%, some have translated that into buying about 6 more months at a given level of functionality (i.e. you would be able to continue to drive for 6months longer while on one of the drugs compared to if you were not taking either drug). The Leqembi infusion is bi-weekly, the Kisunla infusion is monthly. Patients can stop taking Kisunla when amyloid beta is cleared from the brain, while treatments with Leqembi are currently recommended to be terminated once the patient reaches later stages of AD. During the clinical trials, incidents of Amyloid Related Imaging Anomalies (ARIA) are higher with Kisunla compared with Leqembi. Although the name may sound innocent, the danger is high, as we are talking about brain bleeding and/or brain swelling. As a preventative measure, standard treatment for anyone on Leqembi or Kisunla is to periodically receive MRIs early during treatment, to check for ARIA.

I just had my 13th infusion of Leqembi, with zippo side effects. This week I have my last third and final MRI. I am perfectly fine after each infusion, one day I went to the gym and ran a 5K. I'm retired, but I would easily be able to keep working while on Leqembi. My adjustment to Aricept was harder than anything with Leqembi.

Here is the link to the other forum with posts about Leqembi. There is also a restricted group Facebook called "Leqembi Support Group". Over there, over 100 people (or their loved ones) post about their experiences with Leqembi.

https://alzconnected.org/categories/i-have-alzheimers-or-other-dementia