Had a new member ask me a few questions… I found out she is in the Ageless RX PEARL Study.
Any others on here from that clinical trial? Anything to share?
Curious!
I signed up for it last fall but my wife and I moved to Canada for a few months which made it logistically hard to do, so I dropped out before starting. I did a few zoom calls with the administrators and had my doctor fill out a form and order some blood tests, but I would have had to come back to the US to do the dexascans and figured out how to get the prescriptions forwarded to our Canadian address which became a hassle with the Covid restrictions on the border crossing.
If I remember correctly, you had to pay for the monthly rapamycin, but if you are in the placebo group, they would prescribe and give you the rapa afterwards which is nice and I like the idea of helping advance the research.
I just assumed now that I’ve been taking it on my own I’d be ineligible. Also there is a minimum age to enroll so some younger friends of mine couldn’t enroll.
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Thanks Will for a look behind the PEARL clinical trial curtain!
Wonder how many participants are looking on this site.
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I signed up, did the interviews, etc., but then decided I didn’t want to risk being in the 0 mg (placebo) cadre and so I dropped out. I told them I’d already started taking rapa.
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Your move to remove yourself and go solo is understandable. Which I would guess is one of the challenges in setting up the PEARL trial… partially why it has taken so long to get going.
If you know enough to want the benefits of rapamycin… why wait. Every year without it is a setback for your future.
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@Agetron, exactly correct! I originally learned about the PEARL trial from Matt K, and at the time didn’t have a prescriber - so I needed a path to get rapa - but shortly thereafter I found a prescriber ( and subsequently have been going the IndiaMart route ). So why wait for PEARL and possibly be in the 0mg group? I’m pushing 78!
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As written in Mikhail V. Blagosklonny classic paper;
"Rapamycin for longevity: opinion article"
“If you wait until you are ready, it is almost certainly too late.” ~ Seth Godin
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I am newly enrolled in the PEARL study (PEARL Trial to Prolong Life With Longevity Products | AgelessRx, Participatory Evaluation (of) Aging (With) Rapamycin (for) Longevity Study - Full Text View - ClinicalTrials.gov); I was admitted shortly before they stopped enrolling new participants. I talked with “Dr. Z” (Sajad Zalzala) on Zoom, and also in person at RAADFest in October. I’ve completed the informed consent, initial blood tests, DXA scan, GlycanAge and Thorne Microbiome tests, and as of this date I’ve taken two weekly doses and completed two weekly reports (blood pressure and some health questions).
The study period is one year. Since it is double-blind, I could be taking 5mg Rapa, 10mg Rapa, or a placebo; to my knowledge, no one is paying out-of-pocket for the medication during the study itself. (There was a $360 initial fee that helps offset some costs.) I do understand that those who turn out to be on the placebo will be offered a year-long Rapamycin prescription at no cost, after the study.
I’ve previously participated in a human clinical trial, so I’m familiar with the process; so far I’m favorably impressed with the way this one is being run. There are 150 participants, and I understand that some of them have been in the study for 9 months or more, so they should be accumulating some interesting data by now.
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Hey welcome… and appreciate the perspective.
I have taken the GlyanAge test twice. Would like to hear about you baseline with the test.
After 2 1/2 years of rapamycin my Glycan age is 51 years…I am 65 chronological years. It was 37 years the 1dt test and I really upped the dosage for 7 month 38mg…
… I think it cost me 15 years.
Going back to lower dose 6mg and rest periods off rapamycin. See if I can get those years back. Lol.
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I haven’t yet received results from the GlycanAge test. I have had a series of epigenetic age tests, because I previously participated as a subject in the TRIIM-X clinical trial (http://interveneimmune.com/, Thymus Regeneration, Immunorestoration, and Insulin Mitigation Extension Trial - Full Text View - ClinicalTrials.gov). I have learned to view the epigenetic age measures as relative measures, and not to take too seriously the reported “age” as a comparison to chronological age. (I have seen a 28-year range in epigenetic “age” measures computed from a single methylation dataset, using the same blood sample – with PhenoAge the lowest and GrimAge the highest.) So I’d say you have a signal to reduce your Rapamycin dose, but I wouldn’t interpret this as a “real” 15 chronological year change.
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Thanks for your reply. And, that was my impression that for me 38 ng/mL for 7-months is doing something not so great - possibly too much MTOR1 is off and MTOR2 is getting turned on enough. Who knows. The issue to me is not the age - 37 biological. But, that the same test showed a 15 year increase - change.
GlycanAge is created to measure change. You do an anti-aging protocol - exercise, supplements, diet - then GlycanAge test to see what happened? Glycans went down stay the course - goes up - warning!
I will retake the GlycanAge test in 7 months with less rapamycin 6mg - every 10 days and a shift in my supplements. Now on: Acarbose, TRT, Glycine, Collagen, Astaxanthin, A-AKG, Pycnogenol - pine bark. Let’s move that marker down a bit. LOL
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@Agetron Given the impressive stack of longevity candy you take (you recently shared a list), are you fairly confident the negative effect on bio age was from the higher dose rapa or are you just pulling back on the more extreme intervention? I hope you don’t mind me asking. I’ve recently upped my bet on rapa.
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@Joseph_Lavelle That’s a great question. I’ve been pondering it myself. 6 mg Rapamycin equivalent seems just dandy, so why not try 9? 12? 15? 20?
I think at some point you hit the other side of the U-shaped curve where a higher dosage becomes detrimental. Probably by inhibiting MTORc2. This dosage is probably dependent on each individual (size does matter IMHO).
I am now trying alternating weeks of 6 mg and 9 mg. Also, I am taking some Rapa breaks which seem to affect the efficacy of Rapa. For instance, for the last 5 weeks I have stopped Rapa while on vacation. Then I started back up a couple days ago on a 9 mg equivalent. Instead of euphoric fatigue like I had gotten before, I now have an energetic fatigue. The first day after Rapa, I’m a little out of it but have a lot of energy and by the second day I just have the energy. It’s strange that a break could have this profound of an effect.
However, during this time I have also added 6-8 g of taurine daily and 5 mg of rosuvastatin as well as taking my 500 mg of Metformin daily. So, all of these combined have had a profound impact on my “feeling” of health. I like the new me!
However, I do think it’s probably mostly due to the taurine. I believe taurine and Rapa are highly synergistic.
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@DeStrider Thanks for the details. I’m second guessing my aggressive increase in dose to offset an extended dosing schedule. I’m torn between going to 14 day cycles or staying at 10 but backing down a bit on dose. (6mg x GFJ). A 10 day cycle is such a bother to schedule that I’m leaning towards 14 days.
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Exactly. If you want to try the higher dose, I’d just do a 14-day schedule. It’s not a race to cram in as much Rapa as possible. I do think that higher doses that are spaced out could be beneficial.
But in the end, it’s just my wild-ass guess (WAG) based on what I’ve learned.
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Hey Joe…
Happy to provide my N=1 insight.
My candy stack… lol…has developed over the years.
That said, my meds and supplements have been pretty stable over the past few years… the only significant change was increasing rapamycin from 6-8 mg weekly for 1year 8 month to almost 36 mg every week for 7 months. Nothing else changed.
My GlycanAge biological blood test aged me 15 years during that increased dose time frame and my TruMe Epigenetic Methylation aged me almost 4 years. Not good.
Just by changing rapamycin dose back to 6-8 mg… after 4 months, I retested and biological benefit returned 7 year reduction in GlycanAge and 3 year reduction in TruMe. Back to benefits again.
Here are the graphs… showing 6-8 mg then a spike when dosage at 36 mg. Two totally different biological markers showing a correlation of a spike aging.
As stated in my topic… More Rapamycin is not better. Dose is always …too little nothing happens… too much harm occurs … you are looking for the sweet spot… in the middle.
I am not going above 12 mg rapamycin because at higher dose I lost benefit.
Hope this helps.
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@Agetron Thanks! That’s good data. Were you able to pick out the offending blood markers? I’ll accept your 12mg as a max for now. Thanks again.
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The interesting thing is that my blood panels and blood markers from the test through the 7 months at the higher 36 mg dose. And, after on the lower dose of 6mg for 4 months…are the exact same as always. No change.
What’s being measured with TruMe spit… is my DNA methylation. The glycans that are on my proteins are examined in my blood. These are things that are not picked up in a typical blood panel. Oh and they cost a little more. DNA spit $130. Glycans in blood abiut $300.
But, glad I have done these tests… will do again in one month… will have been 5 months since last tests.
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Amazing. Even more reason to not fully trust these tests for the good or bad. This process would be much better and easier if we had reliable markers. I guess I’ll study Lustgarten’s work in more detail.
Is anyone building anything or know of any tools that use Lustgarten’s mortality curves?
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Honestly, it’d be great if lustgarten came here instead of posting on the old forum he’s on.
Anyone know him personally that could extend an invite?
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