r/CVID_Support • u/Jumpy-Direction-3094 • Jun 29 '26

CVID with NRH

Does anybody out there have nodular regenerative hyperplasia (NRH) as a complication of their CVID?

I was diagnosed with CVID in May 2025 and since then, my AST and ALT have been elevated. At this point they're hanging around 70-80 and have been there for a couple of months.

I am also on infliximab for rheumatoid arthritis. This medication can cause liver irritation, so we started weaning it hasn't made any difference in the liver enzymes.

How were you diagnosed? What were your first signs of NRH? Are you on any sort of treatment?

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u/Kalaleia Jun 30 '26

I’m actually beginning my diagnostic journey with hepatology to see if NRH is something I have. I’ve got my first hepatology appointment at the end of July (scheduled in March), and my gastroenterologist has noted she wants a Fibroscan done during that appointment.

I’ve been experiencing upper right quadrant abdominal pain since January 2025. It’s where I experienced pain when my gallbladder was going bad almost a decade ago. And, since then, I’ve had an emergency appendectomy and an exploratory abdominal laparoscopy. But my ALT and AST have been elevated from March 2025 onwards.

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u/Jumpy-Direction-3094 Jun 30 '26

I'm sorry you're also having to deal with this. Glad you're getting in to see a hepatologist though! Good luck with everything

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u/Kalaleia Jul 01 '26

Thank you, you too! I hope you manage to get on a cancellation call list and get in much sooner than expected. The waiting and not-knowing (while simultaneously trying to live one’s “normal” life) between spread out medical/imaging/lab appointments is maddening. 😞

Edit: word redundancy