PEARL / AgelessRX Rapamycin Trial Participant Feedback - So Far

Yes, I am one of the brave in the PEARL trial. I just took my 13th dose this week. It is a 52 week commitment. My spouse is also in the trial, and maybe 6? weeks behind me time wise. I call it brave because I am taking the chance that I’m on the placebo, and just doing my part to advance anti-aging science.
I also had a dog in the DOG Aging Project years ago and am currently giving my furries weekly doses as per the current dog trial dosages.
So far, I am feeling a bit firmer overall, a touch less fluffy. It will be fun to see the 6 month DEXA scan results to quantify any changes in body composition. I am a 61 year healthy old female with no medical conditions, and take no drugs. My initial Glycanage age test result came back at 48.
Other perhaps coincidental changes observed are that my lashes are growing in crazy fast, and my new hair growth is almost grey free. And the afternoon short-term energy dip is decreasing. I now can usually skip the afternoon nap if desired.
Here is a negative observation. It seems like I don’t sleep as well the first night or 2 after taking the dose. Sigh.
And here is the best, latest change to date….it’s priceless…wait for it…
A lip sore appeared! around the 9th or 10th week in. Me so happy! I was dancing with joy when it surfaced. And yall know why, don’t you!
Have to run to a meeting now. Peace out rapa friends.

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Sounds like you’ve got the real stuff congratulations.

Will be curious about the final report.

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Great to hear! Thanks for the update, and please let us know how things progress and provide the test results from Dexa, etc.

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Any mouth sores, that will be an indicator :wink:

Do you know what is the dose for the non-placebo arm? Because congrats, it sounds like you got the good stuff.

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Ola JAKEXB!
The Pearl study has 3 levels. Placebo, 5mg once a week, and 10mg once a week.
I find out my dosage in around 9? months or so. Fingers crossed!

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I am also in the PEARL trial. I took my 11th dose last week, and will take my 12th dose this week. So far I don’t have any side-effects that I would attribute to Rapamycin. (There’s a very long list of possible side-effects for example at Rapamune Side Effects: Common, Severe, Long Term - Drugs.com, but I believe these are reported by people on the much higher, daily doses used for immune suppression in transplants.)

I’ll just point out that it’s fairly simple to determine whether you’re on the placebo or an actual dose, though I very much support the double-blind design of the PEARL trial. There is a commercially available blood test for Sirolimus (e.g. from Quest), used to assess patient compliance for people on the transplant dosing. It’s intended for a blood draw say 12-14 hours after the dose is taken. If you took this test and it showed any meaningful non-zero reading, you could be pretty sure you’re not on the placebo, though I don’t think you could distinguish the 5mg vs. the 10mg dose levels. I do believe the PEARL trial is well worthwhile even for placebo recipients, since it includes a bunch of blood tests, GlycanAge, Thorne Microbiome, and DXA scans at nominal to no cost for the participant – and a Rapamycin prescription at the end if you were on the placebo arm.

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We have a thread on the blood test here: How to get a Rapamycin (sirolimus) Blood Level Test

But we don’t recommend you do this to “unblind” yourself in the PEARL trial, because that defeats the goals of this blind trial…

We need more trials like this and want to support every one of them that gets funded so we all get better data on the use of this drug.

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Ola Tahoedenizen! Thank you for checking in my fellow PEARL study colleague. I am committed to being a good sport and NOT testing to see if I am on the placebo or the drug. Yes, lots of easy ways to determine that if I wished. What about you? Will you test?

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I also support the double-blind design. I could see doing this test if I had a concerning symptom or side-effect, and I or my doctor needed to know whether Rapamycin might be a cause or important contributor. But so far I haven’t experienced any apparent symptoms or side-effects. I suppose if I had a lip sore, I’d smile and react much as you have.

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Love it DeStrider! I am so sharing that.

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Is anyone on this blog currently enrolled in the AgelessRX Rapamycin trials? I was told it would be open to the public this Summer. Here’s a link to the invite only offering. Rapamycin Protocol | AgelessRx

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They told me they would only allow the 2 mg dose per week, in an email in response to my question. So, I won’t be pursuing this!

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Here’s what it says about the trial on Agelessrx website.
The generic (Sirolimus) protocol is a titrated plan to move from 2mg to 6mg per week over three months, ultimately ending at 6-8mg (at the discretion of the prescriber).

The compounded protocol is a titrated plan to move from 5mg to 10mg per week over three months, ultimately ending at 10-15mg (at the discretion of the prescriber).
So yes the Sirolimus protocol does start at 2mg but increases 6mg over a three months and then ending with 8mgs. My question is about the blood test they require every month. I presume I’d have to pay for that.

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They are running a “trial” and charging $150/month to be in it? I thought you usually get paid to participate, or at least it’s free!

That said, had I not already secured a source, I prob would have joined!

In the PEARL study they provide a ton of biological and blood testing that would cost you a lot more money than they are charging you - so its still a good deal!

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Good morning I am in the pearl study by ageless RX. Pretty sure I am not on the placebo. Started December 5,

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I paid $360 I think to join the study, everything else is include. If you are in the placebo group you receive the drug after the study. So far everybody has been very professional. Lots and lots of bloodwork a dexascan, Thorne microbiome test and another test I can’t remember the name. When I am done they will release all the data to me. Side effects a few mouth sores and weird skin spots nothing that worried me. I am 64 but I feel like I am Reentering menopause. Mood swings and spotting. I have had more energy and a few time the euphoria that is mentioned at night I feel very very warm.

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