My 7 year old daughter has been on vancomycin for over two years for the treatment of her psc with ulcerative colitis. I am happy to say she has responded extremely well to the vancomycin and her lfts all normalized after less than a month and have stayed very stable over the last 2 plus years. When she was first diagnosed at 4 years old, the GI doctor prescribed ursodiol. She has remained on a dose of 250 MG a day while taking the vancomycin - 375 mg per day. Since her lfts have normalized on vanco is there any benefit to the ursodiol? Part of me says if she is doing well, don’t change anything, but the other part of me says, if you can reduce the number of medicines you are on, especially since this will be something she will be on for decades, should we stop taking the ursodiol? Anyone have any first hand experience or thoughts on the subject. Thanks, David
I would encourage you to continue with the URSO medication. I’m so glad the Vanco has helped normalize her lft’s, but keep in mind it is not a cure for PSC. The URSO keeps the bile thin so it can flow better around any ducts that are getting strictured, etc. I see no long-term problems in taking it. I’d certainly get an opinion from her hepatologist before discontinuing for sure, and if her numbers begin to rise go back on it should you decide to drop the medicine. I’m like you, if it ain’t broke, don’t fix it by changing something. The very best to her. I trust she has many more years of symptom free life.
PSC 2011 / Liver Transplant 2015
There shouldn’t be any harm staying on a low dose of urso aside from cost. Urso at higher doses is associated with a poorer outcome potentially because it can be metabolized by gut bacteria into more toxic secondary bile acids. This is a non-issue in your case because your daughter takes such a low dose and the vanco kills the bacteria responsible for this conversion.
Doctors are still pretty split on prescribing urso. My center won’t entertain it at all. Looking around the facebook groups, it seems there is a slightly smaller population of pediatrics taking both urso and vanco versus those taking vanco alone. I believe the Stanford group prescribes vanco by itself.
Another option is to ask about tapering off urso slowly while keeping tabs on LFTs and symptoms to see what happens, rather than going cold turkey.
Agree jtb. Our experience: my daughter (UC and PSC) was on Vanco only, since she was 13years old (for the past 4 years now). Her LFTs are normal (500mg Oral Vanco, twice daily) and the Fibroscan showed a normal liver (no fibrosis) in Feb 2017). We took the decision not to have our daughter on Urso and Vanco at the same time as Urso could ‘mask’ the effects of Vanco and we will not know if and what dose of Vanco works best for her (and/or if we can reduce the dose). Urso and Vanco have 2 different mechanisms of action (‘increase in bile flow, etc’ vs antibacterial). If Vanco works (ie bringing the LFTs down), then one could assume that the ‘liver is protected’. It would be a good a idea to discuss that with your consultant as well. All the best wishes for your daughter. Daniela
Thanks all for the feedback. I think we will take the issue up with my daughter’s hepatologist. We will be cautious no matter what we decide. I just want to say, when I have those difficult days where the stress and fear gets me in the heart and soul, it’s great to talk to those in this community who either have the disease or care for a loved one with the disease. We often hear horror stories about the nasty behavior in the online world, but there is another side, one of compassion and fellowship (this board represents that) which is simply marvelous and comforting. I tend to be a glass half full kind of guy, but I really do believe we are going to beat this disease for good someday. Best wishes all, David
Hi. My son is 8 years old diagnosed las year PSC, Crohns overlapping. Have been only with urso 300mg for the vile ducks and prenisolone with methotrexate for the track. Enzimes have been normal for months.only to go up when he gers a cold ect… Never been in vanco. What is the benefit of this drug so I can ask my Hep. Doc.Thanks