I'm about to start rapamycin; looking for dosing advice

I’ve been studying rapamycin for the past 4 years, been taking it for 3, and have never seen any data that links rashes or mouth sores to “immune reaction”. Peter Attia has said himself that he has no idea why mouth sores happen sometimes with rapamycin use. Moreover, immune system suppression with rapamycin typically only happens with longer term, daily rapamycin use (not with periodic pulsed dosing as is done with typical anti-aging protocols). So yes - I’ve seen no research papers that would suggest that rashes or mouth sores are linked to the immune system. But - I’m happy to be proven wrong if someone has the research papers that demonstrates this link.

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I find that this is a very personal decision. In the past I’d get a rash under my Fitbit on my wrist after taking rapamycin. The rash would mostly clear up between weekly doses, but not entirely, and would come back with each dose. Sometimes I skipped weekly doses, mostly I just kept taking the dose. Ultimately it comes down to how bad and irritating you find the rash, etc. and if you want to have it completely clear up. In my case, I pushed my dosing schedule out a bit to 10 days, and ultimately stopped wearing my Fitbit and the problem went away. But your choice may differ…

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When I studied medicine the dermatologists always boasted that their specialism has the most diagnoses but then we said that they only had 4 types of therapies: corticosteroids, vitamin a derivatives, antibiotics, antimycotics, cold and if you don’t know you can always slap on some combination preparation…

Anyway not all skin conditions are immune related but indeed many of them are :stuck_out_tongue_winking_eye:

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Good morning, Rapafriends! Such interesting points, all. Here are a couple things I’m thinking…

  1. I’m a clinical psychologist, and I spent a lot of time as a research fellow at Stanford. When I was a Ph.D. candidate, my experimental design class was one of the most difficult–not because it was difficult in the same way molecular biology was, but because it became very clear that designing a really elegant, “pure” experiment (meaning, eliminating all “noise” from uncontrollable variables) was almost impossible. I’m wondering whether analyzing and identifying the source of rashes might be the same, regardless of rapa use. Much like RapAdmin, I’ve definitely had a rash under my watchband from time to time, and I haven’t really been able to determine its origin. Something I ate? A switch-up in the brand of vitamins I take? Seasonal variables, such as pollen in the air, or humidity which makes me sweatier? I think it would be impossible to say, so I mostly just ignore small random “system glitches,” such as a temporary rash, unless it’s a situation where I can 100% verify it’s something weird I did to myself–and obviously, stop doing it. (In the case of the watchband rash, I simply switched and wore my watch on my other wrist for a week. An added bonus: I switch wrists from time to time, anyway, because it’s an excellent brain exercise! I hope you’ll all try it. Simple and fun.)

  2. By the way (and coincidentally, this is something I currently lecture on), there’s some excellent recent research that points to “suppressed emotions” as still another cause of random skin rashes. (If you’re a Freudian and you want to argue the differences between repression and suppression, I’m not your best sparring partner. I’m a behaviorist, and I don’t differentiate.) So if you want to add even more mud to the already-muddy waters of finding the causes of temporary, minor skin rashes/eruptions, there you go! One more thing. (You’re welcome!)

Once again, I send my thanks and best wishes to everyone who contributes to this site. And a big shoutout to RapAdmin, who keeps us on track. I feel so well supported by this community of interesting and thoughtful people.

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A great idea - I’m going to try this. Thanks for posting.

Sorry but are you suggesting there is an overactive or suppressed immune reaction in these posts?
After all, as you also discuss yourself later on: (depending on among others dose and pathology) Rapa may potentially result in a lowered immune response.

@mike666 You mentioned the young blood transfusions - was that with Ambrosia? Did you do anything in the way of pre and post epigenetic testing, or other blood testing markers, to test on what the effects and benefits were? Curious what your take was on the transfusions…

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Of all the treatments that you have done, which do you feel has provided the largest benefit?

If you haven’t measured the benefits of any of the treatments, how do you know if they are successful or not?

Yes it will. On Metformin and Rapamycin, I never need to worry about constipation again. I am so regular, the janitor of the bathroom calls me Norm.

That’s a Cheers reference for the younger folk here…

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I eat 25g of Chia seeds each day. That does the job. They are soaked in something containing water - the something varies. Chia seeds absorb up to 10 times their volume in water, but are themselves about 1/3 fibre.

DeStrider, I’m sure you’re aware of hydrocortisone cream for a rash or pimple that itches. From my experience applying it immediately upon noticing a pinkish area is better than waiting to see if it will get worse. Two or three times daily is very effective for me.

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This was the result the first time I took a rapamycin. I felt a stinging sensation like something was biting me. I noticed these marks the next morning.

What was your dose when you did this? This is a pretty extreme reaction, especially if it was a lower dose of rapamycin. How quickly did it clear up?

zazim, That looks like it. When I first had it I tried a variety of different things that apparently irritated the skin and caused it to spread into a few patches. I’m currently staying with hydrocortisone cream for healing. I believe RapAdmin said he lowered the dose and stretched dosing from 7 to 10 days, and that idea sounds good, too. Whatever you do, don’t scratch it. Like poison ivy, scratching will probably make it a lot worse.

Hydrocortisone had no effect on the Rapamycin rashes. Stopping Rapamycin did. The pimple on my neck was dark red for 3 weeks while taking Rapamycin. It dulled about 9 days after I took a break.

It was 6 mg when this happened.

Hi, gang! Regarding skin rashes/outbreaks, I’m wondering whether anyone has investigated the organ transplant side of rapa use? Since organ transplant patients utilize a much higher, continuous dose of rapa, I’m assuming that skin rashes/outbreaks may be a fairly common side effect in that population? And if so, then what do the transplant docs prescribe for their patients? It might be helpful to hear what they’re doing in this other rapa arena. Just a thought, and I’ll see whether I can do a little research, unless someone has already looked into it?

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Thats a very good idea. If people do any research on this, please post results here.

I’m thinking we need to get a page with all the common side effects, and common tactics for mitigating these side effects… its on my todo list, but I’ll pull from threads like this when I do create it.

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I love the idea of a page with common side effects and ways our community has mitigated/resolved them. Thanks, RapAdmin, for suggesting it! Some good news: I have an appointment to interview a clinical pharmacist who works in the organ transplant space. I haven’t spoken with her yet, but I have to assume that she’s going to know a lot about rapa, its side effects, and what they recommend to resolve the most common problematic issues their patients encounter. I will of course ask her about rashes/skin eruptions, but I’ll also let her speak “free-form” (if you’re a clinical pharmacist, is it called “riffing?”) about any other common side effects she deals with, and how they’re most easily and expeditiously treated. Stay tuned for my report.

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Glad you asked the question DMD bc I am right behind you on starting and I match your bio stats very closely as well. Therefore I am grateful for the replies you received. As an aside, DMD, can you tell me what NMN brand you take?