I just want to share a brief story. Somebody I know well (44F) has mild Sjögren’s syndrome (where the body attacks the glands in the mouth). They also have a kinda inconclusive diagnosis of rheumatoid arthritis, where they meet some of the key diagnostic criteria, but not all. Basically, she has no overt joint issues, but positive blood markers (including positive anti-cardiolipin antibodies and RA factor). She has had a few previous autoimmune flare-ups, including an attack on both ureters, and an apparent attack on some peripheral nerves in her legs. Other than that, she is extremely fit, healthy, athletic etc.
Her doctor generally tracks progress by measuring serum RA factor. I have seen her blood tests since 2014 and RA factor has always fluctuated between 150-300 IU/ml, getting notably worse during and after pregnancies. Highest level was 3 months after giving birth where it was 533IU/ml, and the average from 2014 to 2025 is 247IU/ml. (For reference, I once tested mine out of curiosity and it was 0. Apparently normal people are usually <5IU/ml).
The main tool has been prednisolone which got her through pregnancies, and her doctor uses to bring RA factor down when it climbs too high. Obviously that’s an unpleasant drug which gives you water retention, moon-face, messes with bone density and disrupts sleep. She’s taken 200mg hydroxychloroquine for decades, and she’s also occasionally used a very expensive antibody infusion (Belimumab) to deal with acute attacks. One of the biggest issues is that the condition makes her tired quite easily, and that’s the strongest correlation with RA mark. i.e. usually if she’s really tired, RA mark will be high.
Anyway, long story short, her most recent RA mark results are below:
173, 193, 163, 167, 194, 114, 149, 64, 75
I bet people can guess between which two tests she started taking Rapamycin!
64IU/ml is an all-time lowest result. Lower than ever achieved while on high doses of prednisolone. We thought maybe it’s a coincidence, but another test 3 months later came back with 75IU/ml which is still less than half of her average level over the last several years.
And the best thing is - she’s only taking 2mg per week. Edit: she weighs around 50kg.
She says that subjectively her energy level is also a bit better, but the good news is that RA levels are predictive of future progression into full-blown rheumatoid arthritis, and it reflects B-cell/auto-antibody activity. Seems like Rapamycin, even at a very low dose, is really quite effective at dialing that down.
