Conditions
Pyoderma Gangrenosum
Pyoderma Gangrenosum, or PG, is an extremely rare condition involving skin ulcers. These have a blue-black edge and will discharge pus, which may have an unpleasant odour. The condition is usually very painful, to the point where it may be debilitating for the sufferer. The ulcers usually start as a small bump or blister which will spread and become ulcerated extremely fast. A speedy diagnosis is advisable if PG is suspected. PG can affect people of all ages, but is more common amongst adults, in particular those who have an underlying disease.
PG has been known to occur in places where there is trauma or previous injury to the skin (this process is known as pathergy). It most commonly manifests on the legs, but can also affect hands and other parts of the body. It is often linked with having a poor immune system and complications can arise from bacterial infections or associated diseases. Swabs and blood tests are therefore common when diagnosing PG and a skin biopsy may also be necessary.
The cure for PG often varies depending on the individual case, but will be overseen by a specialist dermatologist. The condition is managed through a combination of treatments, from dressing the wound and courses of steroids to immunosuppression, whereby the immune system is controlled by drugs. In cases where ulcers are particularly large, surgery may also be needed. The healing process is a slow one and scarring is highly likely.
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Does anyone else out there that has PG work full time? how do people cope and how do you manage to get other people to understand it, without showing people my legs? simply saying 'I have a bad leg' doesn't really cut it if I want to put my leg up on a chair in a meeting. Also does anyone have young children? I have a two year old and would love another baby.
Hi, my mam has been diagnosed as having severe bulllous pemphigoid which is a rare autoimmune skin disease which causes blistering of the whole body, she is in an awful lot of pain her whole body feels like its on fire and constantly itchy.this has been ongoing for 14 weeks now and is getting no better (worse if anything)even though she is taking steroids to try and control it, liquid morphine for the pain and has her whole body in bandages each day after treatment where a steroid cream is applied. please does anyone know if she would receive any better treatment if i was to arrange private healthcare. any advice on how i can help her would be greatly appreciated.
is it true that surgery can make things worse wounds won;t heal up. i have pg especially on my breast area and on my legs, arms ears and stomach. i also suffer from Behcet's syndromeas well as other problems related to Behcet's.
Has anyone had sever exhaustion or lethargy once diagnosed with PG? My mum is 64 and was diagnosed with PG following many tests and a very lengthy stay in hospital after falling in ill in February. On top of that, she was diagnosed with secondary breast cancer in the lining of the lung just a couple of months before. The cancer is stable which is good news but she is just exhausted when doing anything, whether just walking up her driveway out to my car or when I take her to the supermarket. The oncologist ensures us it's not the cancer. Has anyone else had symptoms of real exhaustion (severe lethargy)? She is still being dressed for her large ulcers but they are healing fortunatley. We are really desperate to hear from others who have felt like this 6+ months on please.
hi Michelle my mum got pg in 2006. The drugs they prescribed did not agree with my mum and had the adverse affect. to this very day she is on microphenalate( hope thats spelt right) and highest intake of steriods she canbe on and still her legs break out. She has recently contractd a virul infection, but she has no imune system. She is constantly tired and has no energy. My mum also had cancer, bowel cancer. I know this is a incurable disease but im trying so hard to find something to control it
My mum is seriously ill, and the only thing left we can think of that is causing her ulcers on her legs, feet, stomach and ear is PG. We live in a very small district with only a general hospital who have made things a lot worse. I was wondering if anyone could give me advice on a specialist who may be able to help? If it has to be a private consultation that is not a problem, we just want her to get better and be out of pain.
Does anyone know where infliximab treatment for Pyoderma Gangrenosum can be given privately ? It appears the NHS only permits 25 people per year to receive it here in N.I. I realise it is very expensive but we are desperate. Thanks
Does anyone know where infliximab treatment can be given privately ? It appears the NHS only permits 25 people per year to receive it here in N.I. I realise it is very expensive but we are desperate. Thanks
I have had symptoms of PG / vasculitis for three years no diagnosis as yet. I have tried all kinds of dressings and creams non of which have made much improvement. Different ulcers appear to have responded to different treatment first period healed with compression , second flare up was more severe and took almost a year to heal being treated with dapsone, azathiapene, predisplone oral and iv. I have tried numerous dressings and creams however the recent flare up did not respond to IV as hoped, as the steroid creams were effecting surrounding tissue I used dipropase (emmoliant) don't know why but this helped the ulcers to heal within three weeks, consultant was amazed that ulcers open for 8months, healed within three weeks of using diprobase (still taking azathiopene.
hi my husband has suffered from PG since june 2010. he was not properly diadnosed till january 2011 when after contracting infections in them and being rushed to hospital with a temperature of 90.9. after many appointments in the dermatology dept, they have put my husband on predislone 105mg aday. he was on this for 6wk. after swelling up and having problems with eye sight and breathing they now taken him off and put him on ciclosporin which makes him sick. his legs are now breaking out again worse than before. he has one on his stomach and one on his arm as well. he is at the point of no return. as well as other medical problems these are preventing him from walking because of the constant pain that he is in. any answers please out there.... we are both fed up, worried. i just dont know were to turn or who to turn to next
Hi there, I've had PG on and off for ten years, more on than off in the last 2. however Steroid and Cyclosporin are not the only drugs taht may help this condition. I thoroughly suggest your Hubby goes back to the consultants or actually see's someone else at a different hospital, I have seen different people at Guys, St Thomas, Xhelsea and Westminster, Ealing and Basingstoke over the decade. they all have differing views of how to treat it. The only thing I've had that stopped it almost within a week was Infliximab (Remecade) brilliant drug!. however I'm now immune to it so seeking new methods and failing. if your husband hasn't tried it, it's worth asking/pushing for it.
I wrote on this site some weeks back about how seriously ill my wife has been. Well, it got worse. Due to the pain and immuno-suppressants used for treatment, she ended up with Sepsis and in ICU. She has also had to go through Codeine withdrawal. She nearly died. She is now on Kidney dialysis until- hopefully- her kidneys resume function. She is very weak and is into her 6th week of hospital. Much improved now but still very poorly
sorry to hear about yr wife god i hope she gets better soon!! i've been on dialysis since i was 20 and now i'm 25 and about to under go a kidney transplant!!!! here is a bit of friendly advice for you she needs to be put on a no salt, low potassium diet which means she can't have baked beans, bananas or melon because of the potassium but any other beans are ok and not to much spagitti because of the salt Xlyndeex
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