So grateful for this forum. With so little research anecdotal experience becomes invaluable and so here is my experience with FMT, fecal microbiota transplant.
I triggered PSC in 2016 as a third autoimmune component, since then my liver is constantly worsening at a rate of 0.1 kPA per month (fibroscan), my MRCP shows mild PSC, my liver biochem markers (alt, ast, bili, alp, album) have been normal for a long time. I am symptomatic mainly with RUQ.
0.1 kPA per month I consider fast progressing.
I have done FMT using 6-7 different donors, mostly through enema infusions and capsules. What I have learnt WITH MY N=1 experminatation, perhaps this will help someone else going further:
- FMT is safe. I either benefited or it didn’t impact me. Top down (capsules) and bottom up.
- ALP was normalized by FMT, this is also reported by Dr. Allegretti in half of participants.
- This normalization of ALP is not necessarily of clinical significance, I had no improvement in symptoms or liver stiffness.
- Some donors work much better than others. One donor who stopped my symptoms for some time.
- Fresh FMT is 10x or even infinitely more effective than using frozen samples. I expect some microbes I am missing do not survive the freezing.
- Top down is more effective than bottom up. I believe I am also missing bacteria in the small intestine.
- Overall I am not satisfied with my current results. It is a very impractical therapy. I will try my best donor for 2 mths ca, if I am still not happy I will change approach vancomycin.
Have a nice day everyone, thank you for all your contributions.