I came across this question on another liver site I’m on. Can anyone answer this inquiry?
Our 11 year old daughter has PSC-AIH-IBD.
Does anyone know of Oral Vanco being used with overlap of PSC-AIH?
Currently on Prednisone/URSO/AZA.
Thanks,
Mark
PSC 2011 / Liver Transplant 7-2015
My daughter is also PSC-AIH-IBD, and on Ursodiol, azathioprine, and Flagyl. She was on prednisone initially to induce remission of the AIH. Her hepatologist said she would prescribe oral Vancomycin if it looked as if the current regimen was not doing anything (but it appears be). However, I believe that she would have to be on azathioprine regardless for the AIH. Oral Vancomycin would only take the place of the Ursodiol as I understand it.
Searching the Facebook groups it appears there are a few pediatrics with AIH overlap that use vancomycin. Some continue with steroids, others have tapered to vancomycin as their only medication for PSC, AIH, and IBD. Dr. Cox has treated a lot of kids and likely has experience with overlap patients. He is very approachable by phone or email and is an invaluable resource for any questions regarding vanco treatment.
We have not been able to talk to Dr. Cox directly. Dr. Cox has not returned my phone call, but I finally received an email from his office. I was told the study enrolled only a small number of patients; some have responded well, while others have not. The study is still ongoing.
Our Hepatologist is open to O.V. if things do not go well.
Any information regarding pediatrics with PSC-AIH-IBD on O.V. is appreciated.
I wanted to give an update on our daughter as I know many people share common symptoms. Over the past six months and with the treatment of URSO, Azathiprine and recently added Mesalamine, the liver numbers are currently in normal ranges and the Elastogram came back with good results recently. (I do not want to jinx anything by stating this, but want to share with those that may be reading this and wondering what outcome(s) are possilble.)
From where we started about 6-9 months ago, we are very grateful to the doctors that have treated our daughter. I also wanted to thank this board for feedback and the prayers.
Keep faith and try to enjoy each and every day.
IKE_Lion,
I’m so glad that your daughter has been responding well to the prescribed treatments. I hope that she has many years of good results and improved health. I too wouldn’t want to discourage any of what you have said, but remember that their is no cure for PSC. I think what you are doing is exactly what I would want to do for my daughter. Just tell her to live life to its fullest. If and when problems arise in the future just deal with them and go on with life. She can’t stop living and fulfilling her hopes and dreams just because of PSC. You want to plan for the unexpected like some sort of infection that might pop up but just go on and live life. I would suggest you keep a prescription of Cipro or whatever her doctor prescribes for cholangitis attacks filled and available. I never had to use mine prior to transplant which I’m thankful for but always stayed prepared. Again, so grateful she is doing well.
Mark