Rapamycin and arthritis

I don’t bother with creatinine levels to estimate GFR personally - taking creatine increases my creatinine way too much but my cystatin C didn’t change at all. (~40% of renal transplant patients on it get increased creatinine)

Not to mention, HbA1c can be discordant with fasting glucose and can be overestimated in certain situations - anemia is one possible reason - which can be a side effect of rapamycin (~50% of renal transplant patients on it get anemia). Anemia can also cause increased ESR and being female/older can increase ESR such that values should generally be corrected for this. HOMA-IR may be useful for longitudinal analysis if one understands the limitations.

As for rapamycin, arthralgias (not arthritis) are on the FDA label (~30% of renal transplant patients on it get arthralgias) and appear to be a common side effect at least when used for the labeled indication.

First time I heard of arthritis exacerbated by rapamycin but it’s very much difficult to predict on an individual level with off-label use + other drugs and not much data on this. Different arthritis types have different pathogenesis as well - so asking for other people’s experience with rapamycin on their arthritis may not apply at all. When it comes to the immune system, it gets incredibly complex. Do you have a firm diagnosis of what arthritis and how they came to the conclusion? In very layman’s and oversimplified terms, there is evidence for the innate immune system to be activated by mTOR inhibition in humans, particularly interferon stimulation.


@TongMD Thank you for your valuable input that I will want to look into in more detail. I barely visit here anymore as I lack in time to post here - so sorry to keep this very short.
But for the sake of updating’this thread: I can say that since I stopped taking Rapa all my symptoms have completely disappeared. Besides the fact that of course I know when I experience arthritis again (as after all I experienced it before and it was pretty invasive at the time), I also have dozens of pictures to show for it, as well as blood work that returned to baseline after I stopped taking Rapa for several months. (As said: my blood work had been rather stable for years until I started taking Rapa for 9 months).


It seems that we often forget that dosing is very individual. Most follow guidelines set by other people. It could be a wrong approach. You most likely were overdosing - hence all negativities. It’s wonderful that all side effects stopped after you paused. I had similar experience in the past and a 4 month break resolved all my issues. Then I started again with a reduced dose and longer breaks. The result: I still don’t have side effects. Have you ever considered just 2mg per month or another very small dose?


I was thinking something similar in regards to the dosing except instead of setting a certain length, go by when all the arthritic pain is gone. I can imagine that it could vary greatly depending on stress, diet, season etc.

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