Kisunla

didihamrick

I am interested in hearing from someone who has experience with Kisunla infusions. Thanks!

Didi

LBC83

I have experience with Leqembi, another monoclonal antibody very similar to Kisunla. I recently had my 18th infusion, with no side effects from the medication.

BadMoonRising

I just got off the phone with a recruiter. Apparently, Eli Lily is now testing subcutaneous injections rather than infusions. I assumed it was the same drug, since the recruiter referred to the removal of amyloid.

LBC83

https://alzconnected.org/discussion/comment/236831#Comment_236831

According to the following article, Eli Lily is testing another new anti-amyloid drug (Remternetug) in a trial, with both an IV version and a subcutaneous injection.

The article also notes that Eisai (Japanese company that developed Leqembi) has an application pending with the FDA for approval of a subcutaneous injection of Leqembi. Eisai tested this subcutaneous version of Leqembi in prior clinical trials.

To follow-up on my posting about my Leqembi infusions, I feel the drug as been working as I expected. Namely, I'm hoping that my cognitive decline has slowed somewhat. I'm an Engineer by training, and thus I'm interested in quantitative assessments of things. But it is very hard to quantify the slow cognitive decline of AD, let alone figure out if Leqembi is actually slowing my rate of decline. My long-term hope is that by taking Leqembi, I am buying quality time until an anti-tau drug is available. The theory is that anti-tau drugs currently under development will have a greater impact on reducing the cognitive decline associated with AD. Besides that, taking Leqembi helps me feel that I am taking some action against the dreaded disease, as opposed to simply letting "nature take its course" and accepting the standard cognitive decline associated with AD.

https://www.verywellhealth.com/injectable-alzheimers-drugs-8776312

BadMoonRising

LBC83:

Ugh. Maybe I'm further along than I thought. My notes include the name of the drug. Yes, it is Remternetug.

Since it has been over seven years since I participated in the IDEAS study, I assume I have been incredibly lucky thus far. OTOH, the expert with whom I consulted on multiple occasions, confirmed that those with high cognitive reserve who later develop dementia, do so at a rapid pace. (Snowball effect).

Since you are a stats kind of guy, my Amyloid PET ROI results (12 in total) ranged from Z scores of 2.8-6.7. Of those, only two of the twelve z scores were 3.0 and under. I had never heard of z scores above 3.0 and neither had my nerdier mathematically inclined children. Have you ever seen this?

LBC83

https://alzconnected.org/discussion/comment/236841#Comment_236841

Although I'm an Engineer, I don't consider myself a real statistician. I had to look up Z scores. The definition in the paper at the link below (titled "Automated Quantification of 18F-Flutemetamol PET Activity for Categorizing Scans as Negative or Positive for Brain Amyloid: Concordance with Visual Image Reads") is pretty simple (even though the title of the paper is complicated). Namely, Z = (Individual Value - Mean Value) / Standard Deviation. In simple terms, this means that Z is the number of standard deviations above the mean. The general rule of thumb is that one standard deviation covers 67% of the population, (i.e. Z=1), two standard deviations covers 95% of the population, and three standard deviations covers 97% of the population. Four standard deviations covers 99.994% of the data.

But this is all for a so-called "normal" distribution of data about a mean value.

From this information, a Z value above 4 seems extremely improbable for data with a normal distribution. There are perhaps two disparate explanations for your anomalous data. One would be an error in computation of the results, which is perhaps unlikely. A second explanation would be that the data does not follow a so-called normal distribution. A classic example of a non-normal distribution is family income in the US, where a few people (i.e. think Elon Musk) skew the distribution.

https://jnm.snmjournals.org/content/55/10/1623

LBC83

For those not familiar with Amyloid PET ROI results, ROI stands for Region of Interest. Thus, we are talking about results using a PET scanner to determine the amount of amyloid plaque in very specific regions of the brain. Rather than just getting results that state "You have a little amyloid plaque" or "You have lots of amyloid plaque", the state-of-the-art is to give you a numerical value representing a quantification of the amount of amyloid plaque in each region of the brain. Sort of like a gas gauge for a car, except that instead of measuring the gasoline in the tank, we are measuring the amount of amyloid plaque in each brain region and comparing that measurement to standard values obtained from PET scans of "normal" people (without AD). Computer imaging software is used to do the math, it isn't as if somebody is looking at an image and stating "I think about 20% of this small area of the brain has a lot of amyloid plaque".