Pyroderma Gangranosum

October 2013 I had a small tumor removed from my left leg. Two weeks later the wound began growing out of control. My dermatologist diognosed me with Pyroderma gangranosum. I now have five sores. One is very large at about 8 inches tall. 10 inches wide. It is slowly eating it's way around my calf. The other three on the same (left) leg are the size of two Nickles and a silver dollar. The right leg has one the size of a Q-tip head. I have been going twice a week to my dermatologist to get unaboots, medicine, and shots for this. He has stopped most of the growth on the giant as we all call it. But when he has to clean it, it grows a little more. I am on pain Meds. Prednisone. Dapsone. Insulin. And heavy doses of antibiotics.
The reason I am writing this is because I need to know if anyone has had this, and if they ever healed? I am so depressed I think horrible. Thoughts. I was just put on an anti-depressant. Hoping it helps soon. My family doctor has no clue what this disease is. I have been through all the tests for chrones and colitis. Celiac, and vein tests. Was told by the vascular dr. "There is NO conceivable reason I should have this". No help from any of them. I do not have any other disease in which this ailment is associated with. My Doc went to a wound seminar last week in San francisco and met with the leading professionals showing them the photos of my leg. All told him to do everything we have done. A Miami proffessor just told him "good luck". I do know that something in my auto immune system somehow thinks my body is under attack by a foreign entity, so my body is litteraly eating itself. If they amputated it. The disease would take over again and probably take my life with it.
I am so scared that it will never heal. I really need to know if anyone out there has gone through this and survived. Thank you all in advance.

I was tested for all of the diseases that can cause this and everything came back normal. I take insulin because the high doses of prednisone make my blood sugar rise. I have fantastic blood flow to all limbs. I am told it is an auto immune problem. So they are trying to shut it down in order for the sores to heal. I am told not to be around anyone who is ill, I cannot even pet or brush my dog, because I contracted ecoli from her. I just wish I could find out if anyone has ever recovered from this. It is going on two years for me. I am exhausted and miss doing the things I used to do.
Thank you for your reply. God bless you as you go through your own trials.

I have had PG. I have Crohn's and had a colostomy installed in 2010. After the surgery, i developed a large PG sore around my stoma. It was absolutely one of the worst things ever in my history with this disease. It was painful and nothing seemed to help it. Finally, it was healed by the biologic I was on- Cimzia. It scarred up and didn't cause issues until a few years later when the Cimzia lost effectiveness and it tried to come back. At that point, I was started on Simponi and it healed back up before getting too bad. I am still on Simponi and it is still mostly healed up.

I'm sorry you have to deal with this awful problem. Hopefully something will work for you soon.

Dear creative. I am going to pass on the Meds you were and are on, to my doctor. this is one of the most terrifying diseases I have ever seen in my life. I know that there are similar diseases like brown recluse spider bites and flesh eating germs. This is caused by my auto immune system thinking that it is being attacked. thank you for the information. I pray it never comes back for you. The pain is unbelievable.
Thank you to JaSanne also for all your help and concern.

Sorry to hear about this...I've had PG twice once in 2006 after surgery for a burst J-Pouch but it was only a small spot about the size of a nickel near my new stoma and it went away after 2 to 3 week with daily aquacel treatment,but I've more recently been dealing with a real bad case of PG for about a year and a half I've got 3 rather large wounds on my stomach and waist and they didn't start getting better till about November/December 2014 and their still pretty slow healing...it's not fun but I wish you well.