I am mom to a 16 year old who was recently diagnosed with PSC/AIH/UC. I'm still a little confused about the distinctions between autoimmune PSC vs overlap PSC/AIH, but that can wait for another discussion!
My son has been on prednisone at a fairly high dose for almost two months now. He started at 40mg. After two weeks, it was moved to 60mg. Then there for four weeks, and now back to 40mg. His liver enzymes are much better, but starting to bounce around a little bit.
We think he's starting to experience the negative side effects, and I'm wondering if this is a long time to be on a high dose. From my reading, I thought the tapering would have happened by now, with the hopes of getting him down to a dose that minimizes the side effects. Can anybody share their experiences?
We've started him on Vanco per the Cox protocol (paper published in March 2013). It has only been 10 days though, and he's on the lower end of the doses, so we don't know yet how that's going to go. Of course we have high hopes. I just heard today that a pediatric liver doc in LA has had very positive results (unpublished) on a dozen of his patients. So, crossing fingers. Any good luck with Vanco here?
And then, there's the fecal transplant stuff. Our hospital says they are at least a year away from thinking about trying it with pediatric patients... but 16 is borderline pediatric I think. Anyway, have any of you had any experience with that?
We live in Peterborough, ON.
My daughter sees a specialist in Toronto for Crohn’s and PSC. She was started on 40 mg of prednisone (and imuran)for crohn’s. She was on it two weeks and now she is tapering down 5 mg per week. But this is for crohn’s not PSC.
My daughter is almost 14 and she was on 80mg of prednisone for a few weeks then taper but that was when she was first diagnosed with the UC. She had some probs with side effects from it also… She has been on 40-60mg several times but our new dr was not a fan of the prednisone and she is now only on aspriso. She had bad blood work results on all other meds.
Make sure the dr knows side effects are becoming an issue.
Thanks. Yes, the dr. knows we are concerned with the side effects, but we're trying to balance that with keeping the liver from further damage. His liver enzymes are still elevated, though much less than when he started on the meds. Our son did start a ASA drug (different name) but he didn't react well and we decided to hold off until other things stabilized. We got the ok to taper off to 35 this week, and I'm going to be pushing for continued tapering if at all possible.
I'm curious to know if anybody who's been on a long-term low dose (that's the dr's plan - 18months to 3 years!) and has not had side effects. I only seem to read bad news on the internet. Maybe the people who aren't having difficulty with it aren't posting?
Yes, all three diagnoses came together. Symptoms of IBD led to discovery of the PSC/AIH. I'm still unclear about the overlap/dual diagnosis of PSC/AIH. I have different explanations from different doctors.
How is your daughter doing? I've been reading the bio of the olympic snowboarder with PSC. I still can't believe how well one can appear while having this disease!
Jen said:
My daughter is almost 14 and she was on 80mg of prednisone for a few weeks then taper but that was when she was first diagnosed with the UC. She had some probs with side effects from it also.. She has been on 40-60mg several times but our new dr was not a fan of the prednisone and she is now only on aspriso. She had bad blood work results on all other meds.
Make sure the dr knows side effects are becoming an issue.
Hi mom to PSC teen, I came on the chat line but you aren't here :) I am sure I posted the note in the wrong area. I am off to a conference in T.O. for the next couple of days. Maybe we can connect on the chat line sometime over the weekend.