pyoderma gangrenosum

Posted , 3 users are following.

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!i found smoking weed was the only thing that took pain away!you dont get a high when ur in pain it just stops it! tried morphine,co codamol,ibruprofen,tramadol

1 like, 5 replies

5 Replies

  • Posted

    Hello my name is Enrique yeah in 2012 I was dignosed with pyoderma gangrenous at the university of penn in Philadelphia but for 3 years I had wound on my legs and going to doctors they did not now that I had pyoderma gangrenous they told me I had bad circulation on my legs and I still got a wound one wound left I had more than 20 wound on my legs it was hard to get them to close
    • Posted

      Hi Enrique. Thank you for your reply. Do you suffer from Crohn's disease or IBS? I have been told that PG is a rare complication with either of these two illnesses. Did you see a Vascular surgeon when they said you had bad circulation? I am sorry that you are still suffering after 3 years, they can be so painful and nothing seems to get to the pain. My main concern is that once this has healed I will develop another, but the Drs don't seem to bother about this. Good to share with you Enrique.  Sheila    
    • Posted

      I don't have crohn they did a coloncopi that was good and no bad circulation that good too I just that my wound don't heal if I get cut it take a very long time to heal they diagnosed me with pyoderma that withe white blood cell don't fight infection I had too take morphine every day for this wound that still open 
  • Posted

    Thank you for your reply to my original article, You make me feel I'm not alone with this. I think with Crohn's you get a sixth sense about things and know it's not right, whatever they say at hospital.Thanks again

    Sheila

    • Posted

      Yeah I try everything to had this wound close they did last month and intagraft that did not work out now they thinking to do a skin graft having wound in the legs it not easy to live with it

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