Hi,This is the first forum I have ever participated in. I am so glad I found others who have PG! Have felt quite alone in this nightmare, although I am very lucky to have a supremely supportive husband!
Got mine in 2005, a simple wound caused by a stick penetrating the front of my leg above the ankle. They didn't clean it well, debris left in, ulcerated & here we are.
They can't find a cause, other than the trauma from the stick & ulcer. I have Hashimoto's thyroid ( early) & breast cancer in 2007. High blood pressure & high cholesterol, under control.
Many treatments, many doctors & nothing so far works well.
This is what I do now:Rinse with saline, pat dry. I use Adaptic non-stick dressing( petroleum based guaze) or zeroform, apply thin layer of Bactricin, along with Xenaderm ointment (helps heal faster). Around the edges I apply Fluocinonide. Seems to help with the pain & slow down the spread. Then gauze on top of that, wrapped with a soft cloth or Coban, depending on how bad it is. As you know PG does not like to be irritated. I have not be on any drugs since Dec.'08, except painkillers.
You know the story, takes forever to heal up then wham! breaks out again. I wish I knew what the trigger was!
Mine just broke out again after 7 months of healing well-almost gone.
I have to go have it debrided again. I have them knock me out to do it. I refuse to subject myself to severe pain anymore. Just like everybody else-poked,scraped,biopsied,burned,wet to dry, & even dry to dry. Like what's the point?, not like it won't come back. ( Gee, I think I have a little anger there
If there is too much 'gunk', I chemically debride with Santyl Collagease. Slower, but less pain. There's other stuff too, but for me this seems to work the best, leaves healthy tissue alone.
I have been lucky with infections, only one, because a doc touched me with no gloves! It won't happen again. Gloves, very important!!, when possible, I do all my own dressing changes.
I can't use polymem or Telfa /Curad non stick pads.
allergic reaction. Funny I can use that stuff on other parts of my body.
I have used the vac twice, helps a lot, .Found out u can use Adaptic or something similar to keep the sponge from adhering to your flesh. I had to have one sponge surgically removed. So next time...
I have had a skin graft. It took, as a matter of fact, it is the only skin in that area that PG hasn't attack. Odd. The other weird thing ,is that new ulcers always appear to left of old ones. Like it is making a ring around my leg.
I had hyperbaric treatment, no help. For some I heard Dapsone has worked, not me.
I was surprised to hear others have those little 'bug bites'. I just started getting them & hadn't associated them with PG. Has anybody had them turn into PG? I got them seven days before my last breakout, does anyone know what they are?
Does anybody have unexplained joint pain and/or severe fatigue? They can't figure that out either. Not cancer drugs, not thyroid, not adrenals, etc. I am beginning to think that it might be related to PG. I am also anemic, handled easily with iron & B12. ( probably from chemo)
Does anybody have Antiphospholipid/cardiolipin antibodies? Some times I test positive & sometimes neg. or borderline. They don't think that is a cause either. I take one baby aspirin a day to be safe.
The next doc I am going to see in July is a Rheumatologist. My own personal theory is that there is a SPECIFIC antibody that is attacking my skin. One that thinks my own skin is the enemy & is overly sensitive to an unknown trigger. Stop the antibody, stop the PG.
I hope some of my experiences will help someone deal with this disease a little easier!!