1. < Skin Health
Profile picture for Champ100

Does anyone have pyroderma gangrenosum?

Posted by Champ100 @champ100, May 21, 2025

I joined this site to try and find someone who has or knows about pyroderma gangrenosum. I have crohns disease and that is how it developed. It's very rare and i Haven't been able to find anyone who has had it. It has completely taken over, and ruined my body. And pretty much my life for going on 3 years now. I'm desperate to find support in having this condition or if anyone has any information...

Interested in more discussions like this? Go to the Skin Health Support Group.

Profile picture for robinbatko
robinbatko | @robinbatko | Feb 8 2:28pm
In reply to @champ100 "Been trying to find support groups..this is the closest ive found to finding one. I see..." + (show)
Profile picture for Champ100 @champ100

Been trying to find support groups..this is the closest ive found to finding one. I see no one is really active on this topic.. I know how rare PG is but am hoping I get someone on here to talk too.. I've tried 4 medications and have been to at least 5 diff specialist for dermatology. Traveling to diff states and there seems to be no light in sight. I am a 35 year old female and my body is literally covered in scars and still active wounds.. I thought crohns was bad enough but the pyroderma is the worst thing that has happened to me health wise.. I see ppm have tried the oxygen therapy, I've done a little research on it but figured insurance wouldn't cover it so didn't really get extensive w my research.. any advice, or juat hearing another story ...ANYTHING would be greatly appreciated!! Crossing my fingers i hear back from someone!!

Jump to this post

I was diagnosed with PG three years ago. I have had Crohn's for 50 years. I went to the wound treatment center at a medical center which is part of a medical school. They actually had a PG specialist. I have three large scars but have not had a recurrence. Whenever I see a suspicious lesion, I immediately call my dermatologist. I am on remicade and azothioprine now. When the PG started I was on Stellara. The PG appeared after a long and difficult Crohn's flare. I have never met another person with PG.
Good luck! Hang tough! There really is help out there.

REPLY
Please sign in or register to post a reply.