Thanks for the update. Great to see those improvements!
FYI as I explained in a prevous thread two and a half years ago I had started taking rapamycin and it didn’t change the one nodule I had (triggered by a tiny weight lifting stress in the palm). I then got a second nodule (after already starting the rapamycin) and that one grew for a few months and then stopped. So clearly in my case, rapamycin was not preventing the nodules from forming in the first place.
That new nodule was also triggered by weight lifting stress (on my pinkie finger this time). Ever since this second nodule had stopped growing, a few months in, I have not seen any changes in my hands for two years now, which is a big relief. No improvement, but no worsening either. I don’t know if any of that is partially attributed to me continuing to take rapamycin. Maybe it helps prevent progression, who knows. What I do know is that it didn’t stop it from appearing, and it didn’t reduce the size of the previous nodule.
The main factor that seems to have stopped me from getting new nodules for now is that I have been very careful with my hands and use thick grip pads at the gym to make sure there is almost no chance of me injuring my hands even a tiny bit. Both the nodules I got can be pinpointed to an event a few weeks prior to when noiceable growth started, where I was holding heavy dumbbells and experienced pain in the palm or finger when the distribution of the weight was quite uneven. So mine are very obviously triggered by mild trauma. My hope is that by preventing such trauma maybe I will remain stable for many more years. Hopefully rapamycin helps too.
Btw, I also take gotu kola in hope that it may help prevent Dupuytren’s disease progression. It doesn’t have much evidence for helping (no supplements do) but there was a pilot study that showed some benefits and it is very safe to take so it’s not a bad idea to try. See the study below:
Abstract
BACKGROUND: The aim of this pilot, registry study was to evaluate the effects of a specifc standardized preparation containing Centella asiatica (centellicum®, Horphag research) used as a supplement for 8 weeks on signs/symptoms and ultrasound imaging (measuring variations in tissue density due to collagen remodulation) in subjects with palmar fbromatosis (PFM). METHODS: All registry subjects-14 controls receiving standard management (SM) and 14 receiving SM plus a Centella asiatica-(ca-)-based supplement (centellicum®, Horphag research), two 225-mg capsules a day for 8 weeks) completed the study without side effects or tolerability problems. the two groups were comparable. RESULTS: The improvement of signs and symptoms like pain, mobility, thickness and ultrasound echogenicity was statistically more pronounced (p<0.05) in the supplementation group in comparison with the SM group. particularly ultrasound echogenicity at elastosonography was signifcantly improved at both hands with supplementation. The number of subjects with the problem and the variation in hand grip were also recorded. Hand grip improved with SM from 25.2±2.6 kg to 26.7±2.5 kg; the improvement was statistically signifcant with the supplement (from 25.6±2.3 kg to 29.4±1.3 kg; P<0.05) in comparison with SM. At 8 weeks, diclofenac had been used as a rescue medication by 7 of 14 controls and only 2 of 14 subjects on supplementation. Supplementation with CA appeared to improve signs and symptoms and hand?exibility, possibly by collagen remodulation. The supplement made the palmar aponeurosis softer, more elastic (less echogenic) and mobile, with a better function in only 8 weeks. all main symptoms and ultrasound parameters were improved better (P<0.05) in the supplement group. Oxidative stress was signifcantly reduced with the supplement (P<0.05) with non-signifcant variations in controls. CONCLUSIONS: Possibly, the use of Centellicum® in the early phases of pFM may avoid a full scarring/keloidal evolution of palmar fbrosis and palmar retraction.
Link: https://www.researchgate.net/publication/327783873_Effects_of_collagen_remodulation_with_Centella_asiatica_CentellicumR_in_Dupuytren_palmar_fibromatosis_a_pilot_supplement_study
