Maybe. According to the PEARL trial data, compounded rapamycin is approximately 1/3 of the serum value of the coated rapamycin. That would mean 45mg compounded translates to 15mg coated.
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Thanks. I will bring that up to my doctor. btw, as a side note⌠I could easily put the pill in an âentericâ capsule. Would that have the same effect?
There are mixed reports about that, centering on the claim that many commercially available âentericâ coated shells are not in fact enteric in the sense that they pass through the stomach undissolved into the small intestine. But there are ones that supposedly do and are legit - there are threads about it somewhere on this site. In principle, rapamycin in such a legit shell should act just as an enteric coated one. Thatâs the theory. Who knows what the reality is. For me, I take the rapamycin from Indian pharmacies two major brands Eris/Biocon or Zydus, and I have tested my blood levels of rapamycin 50 hours after a 6mg dose and both showed up robustly, thus telling me that whatever the coating on the two Indian brands, they are absorbed by my body well. Letâs keep in mind that everyoneâs absorption is slightly different, so you have to measure to know how it works for you. I take on an empty stomach, because I donât want any confounders. YMMV.
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Enteric coating or stomach acid is not the issue, itâs solubility.
I have been on 14 mg/week without effect since 3 months. I thought I was at the upper range, I also measured my peak values twice at 1/2/3 hours, I got an avg result of 66 ug/l and my decay values over time (6 measurements) showed an half time of 42 hrs. Another member found 88 hrs . The most quoted value in the literature is 66 hrs. So there is a strong individual variation which is to be expected.
Did you do any measurements of the blood values at 36 mg/week ? That would be very interesting.
What symptoms improved most at 36 mg ?
Here is the Preprint. Note that half the people did not finish the study for economic reasons or non-efficacy.
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Hi, I am replying to this question from you here as this is âourâ ME/CFS thead
Sorry for the delayed answer, I have not been well. To answer your questions:
-We never really found out what the trigger was
-I started to have symptoms out of the blue and lost 8 kg muscle in 6 months (I was very sporty)
-I have been diagnosed also with IBM
-Yes, my immunology is not normal. I have been treated by immunologist but never with corticosteroid. We tried two monoclonal antibodies without success.
A question to you: what are your blood levels of rapa ?
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Sorry you havenât been feeling well⌠I know exactly what your going through⌠and it completely ruined my life.
I still havenât taken the blood test for rapa levels. I plan to do it towards the end of this month.
There are certain individuals whoâs fatigue almost completely vanishes using large, immunosuppressant doses of corticosteroids. Iâm one of those individuals; when I take 30mg of prednisone everything disappears. It does however have terrible side effects, and can destroy your bone density, among other issues. But it might be a good predictor of whether or not rapa helps you.
mAbs are different, and are addressing a very specific infection/attack, whereas corticosteroids are system wide, and suppress your entire immune response. Iâm not sure what IBM is, did you mean IBS? If so, many who have fatigue have IBS. If you have IBD (crohnâs or Ulceritive colitis) that can definitely point to immune disregulation, and sometimes immune overactivity.
I donât know the mechanism for why rapa can dramatically help many with CFS/ME. But there is a subset of us who definitely have immune overactivity⌠and I suspect anything that has strong and system-wide immunosuppressive effects will help. But it could be some other reason.
As a side note⌠Rapam gets me to about 70% cured⌠which is amazing⌠but its not 100%. To get that last 30%, Iâm fine-tuning my diet, and re-conditioning myself.
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IBM is Inclusion Body Myositis. I started having Dysphagia, one of the symptoms, but fortunately with IVIG I have this under control.
Rapa seems to work by inhibiting mTOR1 and hence improve autophagy (and hence improve in longevity), and in the case of ME/CFS especially mitophagy. There are many articles on this, I used ChatGPT to do the search.
Amazing the progress you made with Rapa ! I started at 7 mg, went to 14 mg for 3 months without any improvement, then I saw your post and titrated up to 30 mg, first time last week. Iâll stay at 30 mg for a few weeks and hope for improvement. Note that I take liquid Rapamune from Pfizer, the most bioavailable form. It is still available in Europe (I am in Switzerland), it was discontinued from Pfizer elsewhere because of too much competition from formulators (!).
How quickly did your improvement set in ?
I have measured my pik at 14 mg twice:
Pik 3 Curves 14 mg Feb March 2025.pdf (90.1 KB)
I used a quadratic best fit model using ChatGPT for calculation and graph, My finding are consisteng with others, the pik is between 2-3 hours. Best if you do a few measurements the first time. If you do only one I would do it at 2.5 hrs. I am really interested in what pik value you get, it may be a pointer for me.
To get the 30% maybe also try some supplements ?
Best, M.
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Sorry to hear about your situation. I will do the blood measurement shortly after dosing.
The mitophagy is one possible mechanism for improving ME/CFS, but itâs still early in the debate; and its possible itâs more than one mechanism.
For me, the improvement is pretty quick⌠within 1-3 days. And the symptoms usually come back after about 2 weeks off.
Assuming you are taking the most bioavailable form⌠30mg is a lot. I hope it helps, but if its already been a week and you still feel no improvement, It may not give you the benefit that I get from it.
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Glad it works for you. I am still not giving up. Tnx to AI I am researching all papers and found out that individual bioavailablity may vary by a factor of 10 ! Also blood levels are not identical to levels in the cell.
Here two decay curves at two different ingestions FYI.
Rapamycin Decay Comparison 14mg 25mg pdf.pdf (132.6 KB)
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ME/CFS, Long Covid, and Rapamycin (Unraveled: Understanding Complex Illness)
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Hereâs a quick A.I. summary of the video:
- Rationale for Use in ME/CFS and Long COVID: The speakers explain how mTOR overactivation in patients leads to impaired autophagy, immune activation, and energy deficits. Rapamycin counters this by:
- Boosting antiviral properties and immune function.
- Reducing T-cell exhaustion and viral persistence.
- Improving mitochondrial quality control (e.g., via mitophagy, increasing it by up to 125% in models).
- Alleviating symptoms like fatigue and PEM by restoring cellular energy and reducing oxidative stress. They reference preclinical studies showing rapamycinâs benefits in models of chronic inflammation and related conditions.
- Clinical Trials and Preliminary Results: A major focus is on Simmaron Researchâs observational study and ongoing randomized controlled trial (NCT06257420), involving around 120 participants over up to two years. Key highlights include:
- In a pilot with 40 ME/CFS patients treated with low-dose rapamycin for three months, 29 (72.5%) reported improvements in fatigue, PEM, and orthostatic intolerance.
- Blood samples track autophagy markers (e.g., ATG13 levels) before and during treatment, showing serological evidence of improved function.
- A separate Long COVID trial at Mount Sinaiâs Cohen Center (funded by PolyBio Research Foundation) tests low-dose rapamycin in a double-blinded, randomized setup to assess symptom relief, immune/hormonal changes, and safety.
- Goals include FDA approval for repurposing rapamycin, with emphasis on its well-established safety profile at low doses.
- Potential Benefits and Risks: Benefits include symptom reduction (e.g., fatigue, brain fog, PEM), improved quality of life, and possible applicability to other post-infection syndromes. Risks at low doses are minimal but may include immune weakening, gastrointestinal issues, elevated cholesterol, or swellingâthough these are less severe than daily high-dose regimens. The video stresses consulting clinicians and participating in trials for monitored use.
- Broader Implications: The conversation touches on how rapamycin could represent a breakthrough for underserved conditions like ME/CFS, which lack approved treatments. It calls for more research, including NIH funding, and notes anecdotal successes from patient communities (e.g., on Reddit and Facebook groups). The ultimate aim is validating a cheap, generic drug for widespread use.
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I had a severe case of CFS when I started taking rap and it disappeared after 5 weeks of taking rap 6mg once a week.
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Tnx, I do not know why I do not react as fast as you and others