My 16 year old daughter has had PSC since age 4. She has been well conrolled on 250 mg 2x a day of Vancomycin for all this time. Recently her doctor did a colonoscopy and it shows microscopic colitis. She now wants to get rid of Vancomycin and switch her to Entyvio. I’m asking if we can please increase her dose and she’s not wanting to do that. So I have two questions. What dosage are you having success with, and are there any doctors in the NH/MA area that are good with Vancomycin treatment for PSC?
Thanks!
My son was diagnosed with Crohn’s at the same time as PSC (in 2016). Since he started 1500 mg of Vanco (500 mgx3 time a day), he has never had any Crohn’s issues. His last 2 colonoscopies showed no evidence of Crohn’s. Unfortunately, I know of no doctors in NE
Hi. I’m sorry you find yourself in this position. It’s awful when it’s our kids affected.
I’m in a different country, so no recommendations re doctors or hospitals.
My son was diagnosed with both PSC and ulcerative colitis at 13. Vanco was not prescribed where we are, which was very frustrating. Other meds made some difference, but after lots of advocating from me and his doctors, the health department approved a trial (which he is still on 8 years later!) He has only ever been on 125mg x 4 daily (now takes it as 250mg x 2 daily for convenience). While this is significantly lower than most doses, it has worked for him. He does also take Mercaptapurine (for his UC) as well).
Hopefully you’re able to get a good combination of meds that work for you too. He does see both a liver specialist and a bowel specialist, who work collaboratively but also in the best interest of the body part they treat. So the Vanco is from the liver guy and the immune suppressing med from the gastroenterologist.
Hope that helps. And know you’re not alone in this. I’ll be thinking of you and keeping my fingers crossed for you and your daughter.
Happy to send you information on oral vancomycin. Is your daughter not responding to vanco? Does she still have symptoms? She is on an extremely low dose – the Stanford protocol is 1500mg/day. Swtiching to a biologic if vanco is effective is not logical. Private message me if you would like my help.
Westcoaster,
Welcome back!
Jeff
Thanks Jeff.
I read/stalk occasionally but haven’t posted in ages. This community was such a support when my son was diagnosed, so it’s good to be able to be a part of that for someone else.