I have suffered from Pyoderma Gangrenosum for a year now but was only diag...

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I have suffered from PG for a year now but was only diagnosed 6months ago i am in constant pain and so far all treatments have been unsuccessful. I am aged 31 female and have also suffered from rheumatoid arthritis since the age of 14.sad

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  • Posted

    I too was diagnosed with PG but only after a lengthy period being treated as suffering from a leg ulcer. Ciclosporin proved very effective and I am now clear. The drug is not pleasant but does work.
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  • Posted

    I am a 52 years of age and female. I first had PG when I was 18 years of

    age and spent 4 months in hospital. This almost destroyed my left arm.

    When I was 32, I had a c section, with my son, and it appeared again,

    at the site of the section cut. I again had too spend 4 months in hospital.

    Both areas are terribly scarred. I will never forget the experience or the severe pain caused by this.

    10 years ago, I developed rheumatoid arthritis, which I believe is connected to PG.

    My mother has since suffered PG, for the fist time in her sixties, although

    not severe and I am told this is not genetically connected, although I

    find this hard to believe.

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  • Posted

    I have so much sympathy for anyone who has experienced PG.

    Back in July 2006, my left foot appeared to swell and turn red and warm. I visited my GP straight away and took a course of antibiotics followed by another 2 courses but wih no improvement. By this time, a small ulcer had developed on my ankle bone and not being able to stand the pain any longer took myself down to the local A&E. The doctor said he thought that it could be some kind of insect bite but I have no memory of any bit or injury at the time. I stayed in hospital for 2 days on an antibiotic drip which did improve the swelling but the pain was worse than ever and I had to start using crutches at that point.

    The pain continued and the ulcer continued to grow and during one of my many visits to the A&E outpatient clinic I was told that the dead flesh had to be removed to aid the wound in the healing process. I was given a choice of a maggot pack or surgery but the surgery was said to have more risks so I opted for the pack. I didn't know what to expect but it was sheer hell on earth - didn't sleep for 3 days and nights for pain. Pain killers had no effect. I couldn't do anything for myself as any movement or my leg being in the vertical position was just terrible and a visit to the bathroom left me writhing in pain for an hour afterwards.

    Anyway, the pack was removed after 3 days and it had certainly done the job but now the hole was twice the size and my ankle bone visibe! I was struggling to see an end to it all.....

    I already had psoriasis and had been on medication - Hydroxy Urea which I now understand can cause spontaneous ulceration. While my dermatologist away on holiday, I had an emergency appointment with a different consultant and he told me that it would start to heal if I stopped taking the drugs which I did but it didn't improve.

    I then managed to see my own dermatologist who said that she thought she know what I had but i would have to undergo a biopsy which the staff performed there and then. It involved an numbing injection and a 'hole punch' type of contraption which took a small sample from the edge of the wound. This provided even more pain as the ulcer continued to grow and sprouted an extra bit where the biopsy had been done!

    After 10 days it was confirmed that I had PG and was started on Prednisolone 40mg. This eased the pain almost immediately and was my first relief of any kind in 3 months. Downside was that the weight piled on, partly due to the steriods themselves and also because I could now get into the kitchen unaided. I have struggled ever since to lose the weight I gained but see it as a small price to pay to keep my foot.

    I still had an enormous would measuring about 3 or 4 inches tall by 2 inches across. The derm outpatients suggested various dressing and topical medication but it was just not healing and although was not as painful it was still impossible to walk and to move my foot. The big breakthrough came when 3 layer compression was used just before xmas. It was a long road and involved may dressing changes and visits from the district nurse at weekends but gradually it started to 'dry' up so the bandages became less soiled and could be left on for longer which is good for the wound. A tip, if you are going through anything like this with a 'wet or leaky' wound, please make sure that you have it changed as soon as possible as this is how infection sets in which I suffered a number of times.

    Eventually the dressing came off for good at the end of may 2007 which was about 5 months of compression treatment. I am now left with a scarred ankle which doesn't bother me at all but the thought that this could happen again is inconceivable.

    I know that if anything like this happens again I will be straight down to the hospital.

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  • Posted

    well i have had pg for 3 years but only diagnosed this april 10. originally i had what i thought was a knat bite on my right leg above ankle.went to docs and he said was infected knat bite! day later scraped chair on my left foot and a clear blister came up! went to festival and had flu like symtoms and ended up in hospital 3 days later on a drip of anti bs for a week! they thought one on foot was spider bite and ankle infected knat bite! ended up taking over 3 months to heal with weekely visites to dressing clinic! at no point was i seen by a dermatologist! the next 3 yrs every summer usually at festival i ended up with either wot they thought was allergy to knat bites or a new one of wellie rash! even though i wore socks! so now i think great cant wear wellies or go knats so thought my festival days were up! became neurotic about summertime! ivested in every knat repellent available! then this year i remember itching my left ankle this time knat bite looking thing with redness around edge i thought it was infected ,had put manuka honey on to no avail! went to see my doc who had never seen it active and she said i think u have pg! i was like at last a diagnosis! she refferred me to see dematologist immediately which was gonna take a week! i couldnt wait that long as in so much pain! went to dermatologist department and pleaded for them to see me they told me i had to be referred through doc ! had rung doc up and she got me seen next day! when i was there they said they thought it was pg too! had to have biopsy and this confirmed!they were excited cos drug trial was happeneing and they were desperate to get someone with pg. so went on drug trials for 8weeks to see if immune suppresents or steroids work best. been in agony and not slept properly for last 4 months! but have rested my legs as much as possible often elevated 6 hrs a day! taken vit d and iron too! you do have to put ur legs up for this to heal! horrid experiance and really feel for anyone with this horrid disease! take care and insist on seeing specialist!i also had 2 other small ones on my othere leg at same time!
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  • Posted

    re: pain relief

    i tried co codamol,paracetamol,ibruprofen,tramadol,morphine patches! tramadol worked but made me so sick couldnt continue,the others didnt touch it! the only thing i found was cannibis! its amazing when ur in pain you dont feel the high it just takes the pain away! would highly recommend for pain relief for pg! :cry:

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