Thinking about infusions.... Leqembi or Kisunla??

There is a lot of information for you to read online in addition to talking to fellow posters.

From the Barrows site:

• Lecanemab (Leqembi): Approved by the FDA in early 2023, lecanemab targets and binds to beta-amyloid proteins and prevents them from clustering to form the plaques contributing to disease progression. To date, lecanemab is most beneficial for those with early signs of Alzheimer’s-related cognitive decline. However, more research and long-term studies are crucial to fully understanding the drug’s benefits and risks.
• Donanemab (Kisunla): Donanemab also targets amyloid plaques but focuses on a specific type of amyloid called modified pyroglutamate amyloid. This type of amyloid is found mainly in the plaques themselves. Because Donanemab targets established plaques, it may work best in the early stages of Alzheimer’s. The treatment is given through an IV infusion once a month. The FDA approved it for Alzheimer’s patients in 2024.

I had my first infusion of Donanemab a few weeks ago, and will have my 2nd infusion in 2 weeks. As far as pain, it's just a prick in the arm, just like giving blood, so no pain.

The infusion lasted for 30 minutes and then they kept me for another 30 minutes to check for side effects. I'm on the new protocol for Donanemab where the dose is raised each of the first 4 weeks, and then kept stable for the remaining 32 weeks. I had a slight headache right afterwards (the nurse said it's common, and may just be due to the warm water flushing out of the infusion). I had a slight headache later that day, that went away with Tylenol (what the nurse suggested I take in case of headache). I was told to watch out for any symptoms that resembled a heart attack - change in vision, inability to move a limb, strong pain in the heart area - I had none of those. I'm APOE negative on both sides of the family, so less likely to get ARIA (the brain swelling that causes the symptoms listed above).

I chose Kesunla (Donanemab) over Leqembi because you only have to be infused once per month, so less time wasted in hospitals, because treatment lasts only 36 months, and not for the rest of your life, and because the most recent results seem to indicate that the slowed progression may last past the end of treatment.

I've got PCA (Posterieur Cortex Atrophy), which is a rare kind of Alzheimers and so the early sympoms are mostly neuro-visual, and some problems finding words. As said above, Donanemab may be best for people early in progression. It doesn't roll back symptoms, but may prevent progression. That is what I am most ferverntly hoping!

By the way, does anybody else have PCA?

It wasn't a surprise when DW got the results of the PET scan and found out she had Alzheimer's. Her dad died of it, and so did several of his siblings. At least there's drugs available now that might delay the progression.

Don't you love the unique terminology used in AD diagnosis?

I always like to preface my commentary by noting I'm an Engineer by training and not a Doctor. So this is obviously not my area of expertise!

Going backwards …

ARIA-H superficial siderosis grade None - This refers to iron deposits in your brain. None was found. This is a good thing.

ARIA-H microhemorrhage grade mild - The Leqembi Appropriate Use Recommendations (this is a published document, you can google the title to read a copy) includes Table 7 which describes mild / moderate / severe types of ARIA. Mild ARIA-H is defined as four or less microhemorrhages in your brain. This is essentially indicating that before starting on Leqembi, you already have at least one (but no more than 4) small leaks in the blood vessels in your brain. People with mild ARIA-H with no symptoms (i.e. headache, confusion, dizziness, nausea, etc) can start on Leqembi (as would be your case) or continue on Leqembi if ARIA-H was found to be mild after they started on Leqembi with a no ARIA-H. But if Leqembi causes more than four microhemorrhages, then the recommendation is to stop treatment until the microhemorrhages heal. So as an example, if you start on Leqembi and this causes one more microhemorrhage in your brain, and your other 4 microhemorrhages haven't healed, then you would have a total of 5 microhemorrhages. This would be classified as moderate ARIA-H, and the recommendation would be to suspend Leqembi treatment until one of your microhemorrhages heals.

I initially guessed the "WM" in Fazekas PVWM was referring to white matter (as my MRI results included a discussion of white matter). I turned to Google AI for help, and it confirmed my guess. The term "Fazekas" is referring to a unit of measure for white matter in your brain (sort of like degrees Farenheit is one scale for temperature). PVWM is Periventricular White Matter, which is brain tissue around the fluid-filled cavities of your brain. Grade 1 is the mildest grade on the scale for white matter lesions (so Grade 1 is a very good result). The term "pencil thin lining" means that the white matter seen on the brain scan was very thin and was right along the lining of the ventricles.

Centloid is the standard unit of measure for amyloid plaque in the brain. Your level of 43.49 can be compared with the average of 77.9 for those in the Leqembi Phase 3 clinical trial who took Leqembi (the average for those on placebo was 75.0, both of these numbers are at the start of the trial). During the trial, 24% of those on Leqembi became amyloid cleared (defined as a centiloid level below 30) at 3 months, 36% after 6 months of treatment, 54% after 12 months, and 68% after 18 months. You are starting at a much lower amyloid level, which is good. So the drug should clear your amyloid below 30 CL pretty quickly.

SUVR is another scale for amyloid measurements via PET scans, it is an acronym for Standardized Uptake Value Ratio. If you have ever baked a large turkey in an oven, and used a thermometer to measure the temperature of the meat, you would get different temperature measurements if you placed the thermometer at different locations in the turkey. Same sort of thing with amyloid in your brain. You may have high concentrations of amyloid in some parts of your brain, and low concentrations of amyloid in other places. The SUVR provides a "standard" way for people to read the colored pictures of your brain, to create a numerical score for what you might call your average amyloid brain level. Your global SUVR was 1.25, and apparently "normal" on that scale was 1.14. So your higher SUVR value is indicating you had more than "normal" amounts of amyloid, which is consistent with your Centiloid reading.