Pyoderma Gangrenosum (vs Non-Specific Chronic Ulcer Changes) 

I’m so sorry. I have heard it can be so miserable to deal with. I’m glad you found a good dermatologist to care for you. Best wishes for health and healing.

hello my brother is having very serious problems due to this disease. Do you know any treatment method, doctor or medicine? we live in turkey.

Jules. I’ve just gotten to end of my first episode that almost resulted in amputation. I was on 29 tabs a day. Now on cyclosporine and lyrica. Try to stay positive. You’re not alone. There’s not many of us, but you’re not alone x

As a sufferer of PG this is horrifying. My Dermatologist told me I should avoid surgery if at all possible as any skin interruption could exacerbate PG. It's terrifying actually

@@joolzg1936 I couldn't believe how many doctors weren't familiar w it. The pain made my patients grow impatient and desperate, so they were willing to go through with amputations. Now they still have the ulcers in more horrific places, and are facing the challenges of the amputations. When I first researched it, it seemed like the UK had far more info and studies published in The Lancet. I think they were the first to realize there was a correlation w systemic issues. Please be patient and get many opinions if a doctor wants to do anything drastic. For my female patients: 2 had ulcers move to groin w much worse pain and destruction, 1 moved to her chest and caused massive painful wounds to both breasts. The leg is not the worst place, compared to where they move after the leg is gone. I wish you luck!

@@miaknig3130 Thanks for your response. I am a retired nurse ( L & D ) but I have never heard of this before. I have read several articles that all state no debridement or cleaning the wound as this makes it flare up. Even applying the ointment makes it start to flare up. The pain is so severe and debilitating. My lesion does not seem to be improving, it's about 2in X 3in. It really has affected my daily life. Were you a Dermatology Dept nurse?

@@joolzg1936 I was usually on med-surg units, which is how I came to meet my patients. They were either post-op, or being prepped for surgery. My first patient told me how the sores appeared in her groin, after having the lower leg removed. She was in the hospital for reconstructive surgery, bc the sores did so much damage. A different lady was awaiting a double mastectomy and I was caring for her PG wound drains and dressings on both breasts Another case at a renowned hospital (many cases from around the world, so I'm not giving away any identifying details), was sent there due to the lack of knowledge at her area hospitals. She didn't have a serious sore when I met her, but announced that she could feel it starting. In a few minutes, it looked like a grenade had hit her. Once the eruption (for lack of a better word)slowed, it was examined closely and the femoral artery was exposed which made wound care v precarious. Evidently that is not an uncommon location as I learned while researching every image and article I could find. It seemed like Lancet had some of the earliest info and observed a correlation w bowel disease or other immune response probs earlier than their US counterparts. Early on they had also noticed cases in a few neonates, so they didn't think it was an outside bug (of course the sores can be infected by other stuff after they open) . To this day, the majority of Healthcare staff I meet, have never heard of it. It is in the top 3 of my most feared illnesses. I have heard very dark thoughts come from patients and one needed anxiety meds, which managed desperate toughts. I was baffled by the reconstructive surgery case bc based on what I had heard, any small insult could exacerbate or cause wounds. I think some doctors are doing surgery prematurely and learning as they go, at the patients ' cost and health. The way the sores react to physical or mental stress reminded me of herpes outbreaks. I have had many patients tell me (and then I looked up opinions on social media) that antivirals seem to have little to no benefits, especially compared to those who take lysine and lecithin supplements. I was skeptical about the supplements, but the number of people commenting positively was huge. The next time I had a cold sore, I did try it and noticed an obvious difference in healing time. I started taking supplements proactively and it has helped. I realize you are dealing w something far more serious and severe, but there is a lot to be said about being proactive, prevention, and on high alert for anything that seems to be a common denominator leading to outbreaks (e.g. any extended periods of sun exposure causes cold sores for me, so I know to avoid it and /or use spf). Please don't do make any extreme decisions in haste. There are groups on FB but the posts are old and it doesn't seem to have many active members. Reddit on the other hand, has really improved in almost every area recently. There is a PG reddit w only a few people sharing in the past few month but they seem caring and willing to share suggestions and treatments. I wish you luck and I'm so sorry you're going through this. * sorry for blathering 💞

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I’m so sorry to hear that. Please be sure to see a board certified dermatologist (MD or DO) if at all possible. In my experience, dermatologists are the most experienced at diagnosing and treating pyoderma gangrenosum. Best wishes for good health and healing

Omg, I am so sorry you have that. I've worked at 2 world class hospitals and 2 different doctors thought amputation was was best solution. I warned my patient that I had worked w 2 other people who had below knee amputations, and the sore reappeared in far more painful areas: groin and breasts. Please be careful and avoid drastic moves. 💞🙏

I am suffering with PG also for almost a year. I am now seeing a good Dermatologist and on topical steroids. My Dr just sent me to get labs and a blood flow study to see the circulation in my legs. I would love to communicate with you. I am looking for a support group for PG. Reach out if you'd like.

Sorry to hear this. PG can be very difficult to diagnose both clinically and microscopically (on biopsy). I’ve not seen a case of PG result in loss of a limb that I can recall but I suppose it depends on the situation. Two things to be aware of. 1. Board certified dermatologists usually have the most skill in diagnosing and managing PG based on what I’ve observed in my career. 2. Aggressive squamous cell carcinoma skin cancers can sometimes arise in old burn scars. If an ulcer is large a small biopsy sample may not be representative of the whole ulcer. This is always a problem we face in dealing with ulcers. The point of this isn’t to scare you but to make sure you return to your dermatologist if ulcers isn’t getting better with treatment or is getting worse. Ask them if they have any concern for cancer or if they think a repeat biopsy is needed. Note: PG can be hard to treat and can recur or get worse sometimes even when the diagnosis of PG is accurate and the right treatment is given, so these things don’t necessarily mean there is cancer. Just wanted you to be aware so you are vigilant and so you return to see your derm regularly as they instructed you. I know this can be a miserable disease to deal with. You have my empathy and my best wishes for health healing and peace!

When I see a layer of bacteria and or fungus on the surface of a large ulcer I’ll mention it in the comment and say that I favorite to be secondary colonization rather than the primary etiology. I see this relatively often with pyoderma gangrenosum and other large chronic ulcers. I think it’s worth reporting but I want to make it clear that that’s not what’s causing the ulcer.

Yes, It is mostly a diagnosis made by exclusion. Some cases have classic features on biopsy but others are non specific. When only non specific ulcer findings on biopsy and infection has been excluded as best as possible and the dermatologist thinks it is pyoderma gangrenosum, then I think it’s reasonable to have the derm attempt treatment as PG and follow patient closely to see if it improves or not. If you are not a dermatologist, please considering consulting with derm as they have the most experience in recognizing and treating PG from what I’ve seen.

I’m so sorry to hear that. This disease is complicated and difficult. It is usually treated with steroids or other immune-suppressing medications. But it can be difficult to diagnose accurately because it can mimic infection (but is treated very differently…those medications will make infections get much worse!). In my opinion, it’s important for PG patients to see a board certified dermatologist for diagnosis and treatment. Best wishes for health and healing for your brother.

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This disease is hard to diagnose reliably. Dermatologists usually are the best at it. But lots of other things can mimic it. Even if someone does have PG and has surgery done, it doesn’t always get worse/show pathergy effect. Please see your dermatologist as soon as you are able so they can help ensure the best diagnosis and treatment for you. Best wishes for healing & good health.

@@JMGardnerMD They cleaned my PG surgically and it got much worse after that and a lot more painful and more exudate. It's a nightmare

@@nicolem8660 So sorry to hear that. I see your comment was 8 months ago. How are you now? I have had a PG lesion on my leg for a year now. I would love to find a PG support group.