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Pyroderma gangrenosum 4 over 2 years from crohns anyone else out there
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!!
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"With treatment you're likely to recover from pyoderma gangrenosum. It may take a long time and you may feel stressed about whether new sores will form. "
https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/diagnosis-treatment/drc-20350392
someone with experience will have a better response
I hope you recover soon.
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1 ReactionI have had Crohn's for 40 yrs and it has been in remission for about 4 yrs. I am now medication and symptom free. My colonoscopies have been normal. I credit the taking of Low Dose Naltrexone which I started in 2019. It allowed my small intestine to heal which was full of small ulcers. Tou will need to find a dr. to carry the script. Don't look for your GI doc to believe in it. They usually don't. I take 2 mg. Look it up and research it.
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2 ReactionsI am 71, retired at 68 and I also have that disease. And I used to be a fairly young 67-year-old, but then the wall hit. I’ve had rheumatoid arthritis for probably close to 20 years numerous medicines through time. I now have Copd. 2 years ago I started getting sores on my legs and they found it to be pyOderma gangrenosum. Some of my wounds actually one of my wounds is still healing and now I am starting to get more. Medicines have been changed also are used to take And Grill worked wonderfully and when I started on Medicare they wouldn’t approve it and so the doctor put me on orencia, That is when I started getting the sores. Now on Remicade and we will see.
The only thing that really helped and it took forever and like I said I still have some wounds and I’m getting more was compression and steroids. And I take them sporadically. QAnd for the last two days my left eye is swollen and painful, and I can’t get into a doctor and praying for Monday. I am at a point where I don’t know where to go and I don’t know what to do.
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1 ReactionI have been told that remicade is the best medicine for treating PG.. I unfortunately am allergic to it. I too have been on and off steroids and other medications. I am complete covered in scars.
Between both of my legs I easily have over 100 scars amd still fresh wounds. My arms are now are starting to get bad as well. Thank you for sharing .. it's a terrible disease.. crohns, I have arthritis as well, but like I said , pyroderma is something i.could of never imagined.. good luck to you
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3 ReactionsThank you for your comments. I hate taking prednisone.
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