pyoderma gangrenosum

Does anyone have any information for support groups or medical studies for pyoderma gangrenosum. I have been diagnosed and am on my second outbreak. The doctors can't find any underlying causes to link it to. I have over 15 active ulcers and the pain is unbearable. I need help!!!

[medicmommy]

Hello,
I don't know of support groups for this condition, but I have heard of some success for treatment with silver nitrate cream -commonly used for burns. The silver acts as a sort of "pesticide" on bacteria and stops its growth...I have also heard of drinking colloidal silver treatment to treat from the inside -but the silver water has to be used within a few days of making it and can be expensive to buy. (Most people who use it buy a colloidal silver generator.) -I hope this helps...~MM

[Bhupinder Kaur, MD]

Hello,
Pyoderma gangrenosum is a disease that causes tissue to become necrotic, causing deep ulcers that usually occur on the legs. When they occur, they can lead to chronic wounds. They are not life threatening and rarely cause death.It is not a cancer and its etiiopathogenesis is postulated to be due to immune system dysfunction. Its main treatment involves steroids(topical,injections,dressings), anti-inflammatory antibiotics and immunosuppressive drugs.

The dose of steroids is tapered gradually so as to cause minimum side effects .Also various measures are taken to counter the side effects like for eg users may increase their cardiovascular exercise level to help to counter the effects of changes in the left ventricle and using of various drugs to counteract the side effects of steroids.

I hope it helps. Take care and regards.

[Beth2472]

I was diagnosed with PG in 2007. I've gone to 4 different doctors that did not know what they were doing.My blessing was the fifth one,he treated me with such compassion. Until a few days before Christmas of 2007 he said that the wound has been open too long that we should do skin graft. I agreed and that was a life saver. Of course when I started treatments with him in November 2007, I was going for daily hyperbaric treatments. He asked me to stop showering in November, just sponge baths he said, because the bacterias in my body washes down to the wound. I has taken as much as 2 differents antibiotics to take care of at least  4 different bacterias on my wound.I've had steroid injections, None of which worked.I was given lots of pain medication for the pain that keeps me awake every night. I've has propofol, vicoden, and others neither helped with pain. If you have PG and live in southern California, I suggest go to Glendale Adventist Hospital, Wound and Ostomy center, My doctor is Dr. Jo Wilmeth. I am being treated again, January 2011, for PG recurrence and am confident tat Dr. Jo will take care of me. He is my life-saver.

[UC_1985__PG_2013]

Anyone diagnosed with Pyoderma Gangrenosum needs to request that their doctor prescribe them Gabapentin (Neurontin). Start with 300 mg three times per day. I speak from experience when I say that narcotic pain relievers (codeine-based, etc.) don't do as much for the pain of PG as Gabapentin does!

My first hint of PG was three small white heads on my right heel and achilles' tendon area on Jan 22, 2013.  More white heads appeared on shins and calves over the next 10 days. By Feb 9, 2013, wearing regular shoes (that covered my entire foot) was out of the question. By Feb 11, I was making appointments with a wound care specialist and my GI did a referral to a dermatologist. On Feb 17, I went to the ER because the swelling was getting worse and both legs and feet were red as if they were sunburned in additon to the worsening and spreading lesions. After 3 days in the hospital where I received a shot of morphine prior to the dressing changes, I was discharged with only Tramadol and Hydrocodone.  I was miserable. After laying down in bed for 30 minutes or more, then getting up, the pain was like sharp stabbing pins and needles from knees to feet for about the first 90 seconds, then the pain switched to more of a sharp burning sensation that lasted about another 2 minutes!  One the 1 to 10 pain scale, it was a 10 or higher, especially when I got up in the morning after being horizontal for 4 hours or more.

I actually had a few Gabapentin capsules leftover from my knee replacement surgery and I figured I had nothing to lose so I started taking them. They helped a little, brought the pain of getting out of bed down from 10 to 8, but I was only taking 2 a day so they would last until my March 5th appointment with a Pain Specialist MD and he set me up with a fresh prescription of Gabapentin 300 mg, three times per day.  It has taken the pain of getting up in the morning down to about a 3 or 4, definitely manageable.