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Primary Sclerosing Cholangitis (PSC) - Online Support Group

New PSC trial starting (Boston)

Interesting clinical trial (phases 1 and 2) starting and soon accepting participants in Boston, MA area.

This is about fecal microbiota transplantation. I have heard it was found to be life saving miracle in some related problems. I’m eager to learn about how this worked out in PSC.

http://clinicaltrials.gov/ct2/show/NCT02424175

Thanks, Ted. I'm a believer that the composition of gut bacteria plays an important part in PSC. I'll be following this one closely.

This is interesting. Note the UC and PSCer who had his liver enzymes normalize. I have to wonder if this works the same way that Vanco is working.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3868025/

Too bad they are only enrolling 5. I know I’m getting ahead of myself but, I wonder how often they would have to do fecal transplants to make it an effective treatment option.

I have also reached out to a couple of PSCers that have tried FMTs. I will let you know what I hear back from them.

Thanks!! Best part about this therapy, is the simplicity of it, no side effects for long term treatment.

I realize this was a while ago- but I am considering FMT for my 18 YO PSC+UC+Uveitis+celiac diagnosed daugther, since after very nice 5 years run with Vanco, her UC became more severe, and the Vanco seems to have lost its effect (high LFT). Did you (Crewmom, or any other forumite) ever hear back from the PSC’ers who tried FMT?

I haven’t kept up with PSCers who have tried it. I do know several people with UC who have benefited greatly from it. I am waiting for Brigham Women’s clinical trial to publish their findings.

Did your daughter change brands of vanco? Any idea why it stopped working for her? I hope she finds relief soon.

Thanks for the kind wishes Crewmom. The Vanco we have (all the various brands) is in powder form, so the brand is less of an issue. What we suspect we did “wrong” was 3 attempts over the years to lower the dosage, after a few months of nearly normal lft’s we would try to go for 1000mg, (the baseline was 1500mg), and that always had a negative effect: lft’s shooting up… by the third time we did this, her system stopped responding to the Vanco, and now despite vanco at 3000 (!!!) mg she is still in danger zone, and we’re loking at FMT as an option and desperatly seeking anyone with prior experience. I wonder if anyone from the Boston trial is reading this, and would be kind enough to share their personal experience wit FMT.
Good luck to all.