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DiscussionDoes anyone have pyroderma gangrenosum?
Skin Health | Last Active: Jan 26 2:38pm | Replies (12)Comment receiving replies
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I 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.
I 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.
Thank you for your comments. I hate taking prednisone.
I also have paraderma gangrenosum
I read theirs, underline disease that causes it
A little over 10 years ago it was so bad. They had to do a ton of surgeries to get rid of it. It was on both my arms.
I now have skin graphs covering both arms
I have yet to find out the underlying cause
I’m pretty freaked out because every time I google it something different comes up
I have so many things wrong with me that I don’t no if any of them are the reason this happened to begin with
It happened in 2013..
I will be 55 this month
I haven’t had a reoccurring sores or anything…
I haven’t followed through,.. with trying to find out what caused it. It seems like every time I’m ready to go to a rheumatologist. Something else comes up.
I’ll be 55 years old this month I am a female… and it is scary cause I’ve never heard of anybody else with it or I should say known to anybody else with it…
You’re not alone…💜
Lisa
My husband had this skin disease on his legs years ago. It took years for it to heal but has never reappeared. He has had various auto immune diseases through his life. The skin disease he was told is auto immune. Best of luck it is a very difficult disease to heal.
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.
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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.