My 1st Appt w/ Barrows Neurological

GEH

So I went to my first Barrows Neurological appointment I think maybe last week or so. It went very rell. The neru I was assigned to was very thorough, companionate and a go getter. He, and two Neuros in traing spend over an hour with me asking me about 1001 questions most of which I had never been asked. All and all a VERY positive experience. He ordered up an "MRI with aria protocol" ?? and my first ever PET scan. I am pleasantly surprised that I just received the approval from my Medicare Insurance with no argument or hesitations and I am scheduled for both test on the same day in less than a week from now. Might be able to get some information soon. Yay!!

LBC83

The term "MRI with ARIA protocol" is presumably referring to Amyloid-Related Imaging Anomaly (where the acronym ARIA comes from). An "MRI with ARIA protocol" is indicating the MRI image should specifically be assessed for signs of existing brain bleeding and/or swelling, the two most common types of ARIA. For people who are diagnosed with AD and were interested in the new anti-amyloid medications (like me, for example), it is important to have an MRI prior to starting on one of these medications as a baseline. The MRI can also tell the Neurologist if there is something weird going on in parts of your your brain which might be causing any cognitive issues you could be experiencing (other than amyloid).

There are two kinds of PET scans now-a-days: an amyloid PET scan (which detects amyloid in the brain), and a tau PET scan (which you can probably guess detects tau tangles within neurons in the brain). In the olden days (i.e. before 2025), everybody got either an amyloid PET scan or a lumbar puncture to confirm the presence of amyloid. That confirmation, along with a cognitive test showing reduced short-term memory, were the two key parts of an AD diagnosis. But the times they are a changing, as there is now an FDA-approved blood test with high reliability to confirm amyloid presence.

GEH

Thanks LBC83 for your in comment. You always seem to provide insight and very specific information which I always find very interesting, thoughtful and insightful. So appreciate your contributions. 😊

GEH

So yesterday I spent most of the day at Barrows Neuro having an MRI with aria protocol and my first ever PET scan. the test were four hours apart so I just hung out at the hospital since I live over two hours away. Tomorrow I go in for the results.... Finally maybe some semi definitive answers and a treatment plan. Yay... I am quite excited since it's been a three years journey to get to this point. I'm so excited!! 😆

LBC83

If you are going to consider an anti-amyloid treatment, you might want to read up about Leqembi & Kisunla, the two anti-amyloid drugs approved by the FDA. They each have websites with lots of information about their drugs. In a nutshell, the respective Phase 3 clinical trials showed both drugs were effective at removing amyloid plaque and slowing cognitive decline, albeit with possible nasty side effects including ARIA (brain swelling or bleeding). But there are some big differences between the two drugs: Kisunla infusions are every 4 weeks, Leqembi infusions every 2 weeks. This could be a big deal if you have a long driving distance to your infusion center. Kisunla offers the option of terminating treatment after amyloid clearance (detected in the past by follow-on PET scans, now-a-days one wonders if the new blood tests might suffice). In contrast, the manufacturer for Leqembi (Eisai) recommends continuing maintenance dosing after the initial 18 month treatment. They explain this is in part because Leqembi is "dual-acting", removing both amyloid plaque and amyloid protofibrils which also can damage neurons (Kisunla only removes amyloid plaque). Starting later this month, Eisai will offer subcutaneous shots for maintenance dosing (i.e. no more infusions after the initial 18 months of Leqembi treatment, instead patients could elect to switch to subcutaneous shots).

Dorse

Thank you for sharing this information. I will soon be making a decision on which infusion is best for me.