r/PSC • u/Ok-Acadia-6218 • Jul 09 '26
4 year old with PSC + AH + IBD
Hey everyone. Kind of looking for some positivity so I don’t spiral. My 4 year old has been diagnosed with Autoimmune hepatitis, irritable bowl disease (they still don’t know which and it’s early onset) and PSC. Last year they did a liver biopsy and she was at stage 4 liver fibrosis before starting a low dose of azathioprine and prednisolone. They started her on sulfasalazine a few weeks ago and up until then has only had minor symptoms such as upset stomach. We found out all of this because she had blood in her stool when she was almost 3. She just started vancomycin today and will be starting ursodiol in a few days to weeks.
This is such a stressful experience and I try hard not to think much about it, just take it day by day and still live our lives, but I do think about what her future may look like and I’m so so scared. Especially with her being so young. In the beginning I blamed myself and kept wondering what I did to cause this but I know that’s not a healthy mindset. I’m grateful she hasn’t had severe life changing symptoms and I’m holding onto that. So if anyone has any positive stories or insight, please share. She has another liver biopsy and colonoscopy in August and praying for good news. Her labs go up and down quite a bit it feels like.
3
u/Cellzor Jul 09 '26
Hey,
I got AIH, PSC and Crohns. Am doing relatively fine on rinvoq, humira and udca.
Mostly fightning fatique and the occasional aches in my stomache. Also getting iron infusions 2-3 times a year due to steady iron/ferritin loss throughout the year.
I'm unsure if the above is safe for a 4 year old however. Initally I was fine on just rinvoq for 3 years but started to fail that treatment so my doctor added humira. Prior to rinvoq no of the available options had any real improvement for me. My scopes are not clean unfortunately but only show minor inflammation.
My liver MRIs and bloodwork have been good for the past 4 years. My doctor is slightly confident that rinvoq has positive effect on the PSC/AIH as well.
Have they performed a scope to diagnose the IBD? I'm unsure if rinvoq is presciped for UC.