Hello! There are about 5 or so of us on this board with PG, so welcome! Where is the sore that you have? The dermatologist that I seen had never seen PG in the county I live in. Its pretty rare, like 1 out 100,000 or something crazy.. like we struck the lotttey with this .. ha .. lucky us.. there is hope because I am all healed up and doing great.. Heres my tale.. (I keep in saved for easy reference)
I was diagnosed with Pyoderma Gangrenosum (PG) August 2007. I had what looked like a bit on the front of my calf, just a red bump. Thought nothing of it until it started to get bigger and began pussing. I went to my primary MD and had 2 cultures done as they were convinced it was MRSA. I took 3 different antibiotics during this phase, none of which helped. After this, of course you wait for the tests and the first results are neg so they have me come for another culture, still convinced it is MRSA and then wait for the antibiotics to work. At this point the "bite" is now 2" x 2" and growing, pussing, purple border around the wound, I need to cover it with a large gauze pad and tape it hurts to be open and against clothes. So then I am refered to an infectious disease MD. He tells me he believes it is PG, but I need to see a dermatologist for an official dx. of course more time is going by and its getting bigger and grosser. The dermatologist does a biopsy, goes right in the center of this wound.. hurt like a devil. After the biopsy my foot and ankle swelled so much I could barely put weight on it and I went out of work for 6 weeks. The results of the biopsy come back and he wants to do another biopsy and go deeper into the tissue to rule out anything more. I tell him NO, as 3 months have passed at this point and things are getting worse with no treatment to help yet. I tell him I want to be treated as having PG. So I start 60mg prednisone, the evil enemy. I stayed on this and at 30mg began 3 Remicade infusions to help close the wound completely. I closed by March, almost 4 months later after starting the pred. The kicker was when I went to the GI after the biopsy for a scheduled f/u he took one look and said that’s "pyoderma ganrenosum". I then realized this disease will impact my life in ways I never imagined. I also learned the GI is my starting place for answers and referrals. Unfortunately, yes you do need a biobsy to rule out anything else.. Do some research on it yourself also if you have not already..
There is PG and then Bullous PG
I do not get outbreaks on trunk.......only legs arms and fingers I almost lost a lower leg and finger to this DD............
Vanco is a good antibiotic when not used as it was on me ......
Post Edited (Howlyncat) : 3/11/2009 2:42:55 PM (GMT-6)
I am in the rule out stage for PG. I went to the emergency room Sunday with what they told me was MRSA and started me on oral Bactrim. I had a horrible looking abcess on my calf that they lanced and packed. Hurt so bad!! By the next day my whole leg from knee to feet was swollen to twice the size and pink. The abcess had a huge magenta ring about as big as a cereal bowl. I made an appt. with an Infectious Disease dr. I had seen in the past for Wed. When I got there they were mortified and immediately started IV Vancomycin with a pump to go home and infuse another dose that night. The next day they added Fortaz (another antibiotic). The next day they added Solumedrol 125 mg and Lasix 60mg. The cultures came back no growth of any bacteria. They did cultures for fungus, no growth yet. While they thought it was an infection they told me to stop Methotrexate and NO Cimzia (Biologic). On reading up on the net, Mayo Clinic has a good site on PG, I realized the immune suppressants are what I'm supposed to be on. So I printed info and plan to take it with me to infusion in a.m. She had mentioned PG that's why the steroids were started. I think I'm going to push for PG treatment even before all the prelims on cultures are finished. The abcess has necrotic borders over purple ring around it. In the info on PG it says surgery to remove tissue can make things worse, but she was saying I would need to see a surgeon to have the necrotic areas removed. I don't want to go in there acting like I'm the dr., but do you think I should stand up for myself? For those of you who have PG does it come back? For the first time in 10 years my GI Crohn's symptoms are totally symptom free. I figured this kind of stuff would happen while the GI problems were flaring? Anyone who has some words of advice I would greatly appreciate it!
Methotrexate and antibiotics will help me out to a point but I have also to live with it
I got first sore on thumb after radical Hysterectomy
** I totally agree educate self and others as well
YOU have to be your own best advocate for this and have a good doc that knows what is what and how to TX this
Post Edited (Howlyncat) : 3/11/2009 2:46:42 PM (GMT-6)
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