My daughter (20 years old) was diagnosed with small-duct PSC in January 2019. Her LFTs are high since January 2014. After looking through this forum, we discussed treating with Vancomycin with our doctor and started April 2020. My daughter is on Vancomycin for the last 7 months now. We got all her tests done in December 2020.
- Her biopsy from colon shows complete remission from UC. A year back biopsy had shown mild colitis.
- Her MRI shows no change. There is beading in bile ducts. This was not very encouraging.
- Her Fibroscan score has improved. For the last few years, it has always been 9-9.5kpascal. But this time it is 6.0kpascal.
- Her LFT numbers were improving for the first 5 months (ALT/AST/ALP/GGT, 135/68/155/96 respectively). But this time numbers were high again (ALT/AST/ALP, 231/144/170 respectively).
The MRI did not show improvements, the Fibroscan is not considered as very reliable, and LFTs are still high. The main visible improvement is in the colon for UC. Fibroscan shows possibilities but we are not confident.
We had learned from this forum for other members that significant improvement happens in this time frame (around 6 months). How much can we believe the Fibroscan?
I have no experience with fibroscans, so I can’t answer your questions.
Hopefully, once the holidays are over, you will get some responses from our members.
Can I ask what dosage your daughter is taking?
500mg each time/3x a day. total 1500mg
May I ask what Vancomycin brand is your daughter using? And what stage of the PSC was she at before starting Vanco?
It took my 20yrs old daughter (stage 2 PSC with UC, 14yrs old at the time of the diagnosis) 4 1/2 years on Vancomycin (IV liquid formulation) for her MRCP to show no beading and for the colonoscopy to be normal. Her LFTs normalized since 2015/2016. In her case the Fibroscan showed a 19.5kPa score in 2015 and she is now down to 6kPa.
To get an idea of the progress you will have to look at the combination between LFTs, MRCP, Colonoscopy and Fibroscan results.
Hope that helps,
Thanks for sharing your daughter’s Vancomycin progress.
My daughter is taking the ANI brand (capsules). We don’t explicitly know what the stage of PSC is as she is diagnosed with small duct PSC (which is supposedly early stage). But if we look at the stage of liver fibrosis, the fibroscan of 9.4kpascals before we started Vanco would indicate stage 2-3 fibrosis. Now, her fibroscan is 6Kpascals so the stage should be 0-1. However, our doctor mentioned that fibroscan is not very accurate test.
We are tracking LFTs, MRCP, colonoscopy and fibroscan for the progress, but everything combined is not giving a clear picture. The LFTs and MRCP show no progress but fibroscan and colonoscopy show improvement.
Your response is encouraging that vancomycin helps and we should continue taking it for longer.