Connect
Does anyone have pyroderma gangrenosum?
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...
Like
Helpful
HugInterested in more discussions like this? Go to the Skin Health Support Group.
Connect
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!!
-
Like -
Helpful -
Hug
3 Reactions"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.
-
Like -
Helpful -
Hug
2 ReactionsI 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.
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
2 ReactionsI 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
-
Like -
Helpful -
Hug
4 ReactionsThank you for your comments. I hate taking prednisone.
-
Like -
Helpful -
Hug
1 ReactionI 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
-
Like -
Helpful -
Hug
1 ReactionMy 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.
-
Like -
Helpful -
Hug
1 ReactionI got here with the same question you had, im 28 years old and for about 2 years now I’ve had this nightmare of pg. initially what I thought was a wound from welding spatter burning my leg, turned out to be so much worse. I was fearing it was a brown recluse bite (I wish!) it didn’t even get diagnosed for the first 18 months. I’ve tried so many things but it’s not really shown consistent results, I’m currently back on what I started with which is prednisone, but they are also using some fish skin on my wounds that seem to be making things worse. I see you posted this a while ago but I hope this still reaches you because hearing from someone else who’s had this experience would be sobering.
My husband had this skin condition about 20 years ago. Dermatologist diagnosed it after biopsy showing nothing. He had several sore patches on his lower legs. He was told it is auto immune and there is no treatment. He kept them covered to avoid infection and after about 3 years they all healed leaving ugly scars. They never have returned but he has developed other auto immune diseases. Latest one is psoriatic arthritis.