Rapamycin side effects vs. Alzheimer’s disease decline. Important disclaimer. 11

Rapamycin side effects vs. Alzheimer’s disease decline. Important disclaimer. 11

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This was my, you know, follow on a question on that, listening to this very, very amazing sort of a long and painful journey that you're talking about. You know, there are huge patient communities there's you know, patients like me, there's other big patients community, Alzheimer's takes an enormous toll on you know, caregivers family and their family. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. So there must be people trying rapamycin in patients with Alzheimer's disease and using it off-label, perhaps you know, just of their own volition. Other no research that is at least trying to sort of analyze the data from those patients together. It happens certainly for you know, other indications people do that for quantified self movement, various other things. So what do you do about that?


Yeah, so I'm glad you asked that. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. Question because we actually just got a grant from the impetus grant program to do exactly that. So within the next, I don't know, three, or maybe even two weeks, we will be starting a large scale survey-based study of people who are taking rapamycin off label, not only for Alzheimer's disease or Alzheimer's disease risk but for a variety of potential health effects. And trying to capture that data both on side effects on, you know, potential perceived benefits, and then also asking those patients to share medical and dental records with us to try to look in a little bit more quantitative way app, you know, before and after picture of rapamycin. So it's not perfect. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. It's not going to be a double-blind, placebo controlled clinical trial. But I still think you know, as you alluded to, you can get really interesting and informative information from capturing actual patient experience in that way. So yeah, we're actually working with Dr. Alan Green, who is one of the physicians who has sort of been at the forefront of prescribing rapamycin off the label on this project. He actually has several patients who are ApoE4 homozygotes. So not necessarily have dementia or Alzheimer's disease yet, but are at high risk, much higher risk than the general population developing dementia, who are taking rapamycin, a large number of ApoE4 homozygotes, as well. And so I think that that group of individuals, in particular, you know, it will be very interesting too, to start to try to get a feel for, you know, what their experiences have been. And again, I view it as both potentially getting a feel for positive effects, if any. And I think we have to be clear. We don't know yet. That's why we want to do the real clinical trial, but getting a feel for whether there are potential positive effects, but also really trying to quantify the frequency of adverse effects. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. And that's where I think you can really start to get a pretty good picture from these patients, right? Because they're very different than organ transplant patients, right, they haven't had an organ transplant, and they're not taking high doses of other immunosuppressants. And most of them are taking rapamycin once weekly, four to six milligrams. So it's a very different regimen than organ transplant patients. And, and I think capturing what the actual frequency of side effects is like in those patients will be valuable as well.


So I'd like to remind our listeners, obviously, that none of what we say, what you say, or anybody else's on the product can be construed as medical advice. It's purely for informational purposes and general information purposes only. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. So, you know, people should always consult their physician. It's an important disclaimer and should not take anything they hear anywhere on the internet as medical advice and a sort of call to action. And I think that's just very important to remind people more often than one sexual.


Yeah, I agree with that. And, you know, it won't surprise you to hear that I get contacted by people, often wanting rapamycin for their dog or themselves. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. And I always tell them the same thing I you know, it's important to appreciate this as an experimental drug, at least for these uses. And it's a prescription medication. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. And so, you know, legally, you are obligated if you're going to take rapamycin to get a prescription from your veterinarian if it's for your dog or get a prescription from your physician if it's for you. And certainly, you want it; you want to be doing that under the supervision and with the knowledge of your physician. Dr. Matt Kaeberlein, PhD. Dr. Anton Titov, MD. And so, I agree, it's not medical advice. And if you're going to do it, you want to do it under the care of a physician. I think that is really important for people to appreciate.

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