Comments on: Pyoderma Gangrenosum

By: Dr. Michael Miller

Dr. Michael Miller — Tue, 29 Dec 2009 18:19:00 +0000

I found your blog looking for info to give to a patient. As a full time, certified wound care specialist, I have seen many patients with unon-healing wounds who have been misdiagnosed with PG and treated inappropriately and (fortunately) a few who had PG but were undiagnosed. The message to all who read this blog is that if you are treated and do not improve with 4 – 6 weeks of treatment, then it is time to look elsewhere for help. You can certainly ask any doctors office if they treat PG and how many cases they have seen before making an appointment. There are a lot of different kinds of non-healing wounds and different treatments for each one. One size never fits all and in my practice, antibiotics are one of the last things we consider. I use Protopic with great results for PG but also make sure there are not other conditions simultaneously (venous disease, vascular disease, etc.). Additionally, adequate pain control is a must for all PG and other wound patients. Best of luck with your condition in the New Year.

Dr. Michael Miller
doc@docmillers.com

By: robert

robert — Sun, 22 Nov 2009 08:29:17 +0000

I feel for you brother. I was diagnosed with PG yesterday and now I’m waiting for whatever is next. I first noticed the pain from a small red bruise like spot on my leg Oct. 31st and it had spread overnight (L S S) Saw 4 doctors at there differant times , ultra sound, lab test and a biopsy and now 21 days later they tell me it’s PG. Now what? Took that long to figure it out now we have to figure out how I contracted or developed this painful problem. I am not a diabetic, my colon and bowels are I just want to now how I got it and how to get rid of it the wound is now starting to open up and bleed. Can anyone help?

By: Diane Louise

Diane Louise — Tue, 03 Nov 2009 13:47:25 +0000

Hi. I am so sorry to read of your PG. I have had several bouts with this over the last 20 years. The Drs (dermatologists and Rheumatologist) and I have found that prednisone is very benificial at keeping the ulcerations at bay. Once ulceration begins there is a little known bandage that has had some very good success. It is called Hydofera Blue. It is a simple idea that has provided me with much pain relief. There is a website. Hope this can give you another avenue to explore. Feel free to ask me specifics.

By: Brian

Brian — Fri, 11 Sep 2009 01:42:55 +0000

Hey,

I got PG too, on my center toe and ball of my foot. Smaller than most I have seen on legs, but a nasty little place to get cream and bandages to stay in place. Walking is a joke.

Pain has been increadible. Up all night every night for months now. Cant sleep without pain meds. PG totally runs my life. I am on a cocktail with my dr who take blood every other week to check progress. Soooo slow to heal. I now have the nasty yellow stuff covering the wound that is a sign of healing up.

I have dreamed about simply shooting this toe right off my foot.

Keep up your spirits!
Brian.

By: clifford

clifford — Fri, 14 Aug 2009 22:26:27 +0000

I have a PG sore on my leg, below the knee, about 40% of my shin is effected. I’m 40 years old and have no other medical conditions. Over the last few months my entire life has changed because of this situation. I’m scheduled for a colonoscopy next week to confirm IBD. I have had the symptoms in the past but currently feel fine except for this giant open sore on my shin. This ulcer is stingingly painful, bleeds and demands constant attention.

I have found that using an’ace bandage’ to wrap up my leg, keeping the gauze in place is more comfortable than tape or bandages. Also because my PG ulcer bleeds and produces ‘fluid’ my bandages/gauze gets cemented to my leg. A nurse taught me to just use a solution of water and hydrogen peroxide (50/50) to dampen the bandages prior to removal and this works like magic. The shower on my sore really stings but this solution is virtually painless.

I hope this thing gets cleared up if/when my IBD treatment starts.

goodluck,
c

By: frances

frances — Thu, 30 Jul 2009 06:56:31 +0000

Hi-I know all your pain. Suffered with two different pg breakouts a few years ago. It was associated with my ulcerative colitis. Never had so much pain in my life. I finally got an ointment from the doctor that I put on a spot that is starting to hurt. It is Protopic ointmnet 0.1%(Tacrolimus ointment)It is cyclosporin based and it usually knocks it out within a week before it breaks out into an ulcer. Have a weird pain starting on my shoulder-praying it’s not pg. It Sucks–I feel like I’m always waiting and wondering. Trying to keep a positive attitude. Hope this helps somebody.

By: Jackie Cooper

Jackie Cooper — Tue, 28 Jul 2009 20:56:33 +0000

Dear Dan,
I was very sorry to hear about your long bout with pyroderma gangrenosum. I, myself believe that I have a mild form of the blasted stuff, as I have some small reddened abrasions which have not healed for over three years. When I can’t stand the unhealing scabs any longer, I pick the scab and within a couple of days, a scab reappears. My doctor has pretty much ignored me in my plight and tells me to “quit picking” them. Presently I have two sores – one behind each ear. There have been others, which occured on my back, shoulder, buttocks and thighs but have cleared up on their own)after two to three years. I have battled this disease since 2003 after being hospitalized with a severe GI bleed where I became enemic and also developed thrush on my tongue. I have a diagnosis of ulcerated proctitis.

What has helped me (though has not yet cured me)has been a yeast-free diet and Dr. Schulz’s Formula I intestinal formula (check his web page at: http://www.herbdoc.com

I also plan to not try a product walled Hydorfera Blue and follow the “specific Carbohydrate Diet” which I have found info on through google.

Hopefully what I have told you will help. I never believed that yeast could be a culpert. There is a book out there called “The Yeast Connection” which I found very helpful in helping me determine my yeasst problem in my diet.

Jackie Cooper

By: Kimberlie

Kimberlie — Mon, 25 May 2009 21:51:33 +0000

Hello, hubby has it also. Almost 2 years, still cant find the right cocktails of drugs to heal it. He even did Hyperbaric Oxygen Therapy. He had a week of relief and more started popping up. Meds as to date, Remicade, Tysabri, Immuran, Humira, double dose Humira with Methotrexate, Cimzia and Methotrexate. I am sorry for your pain. It is horrible. Like having Crohns is not bad enough?

By: Kathy

Kathy — Wed, 20 May 2009 13:23:47 +0000

How are you now???? I have PG and I’m about the embark on cyclosporin??

By: Joni

Joni — Mon, 04 Aug 2008 17:36:44 +0000

Hi Dan,

I too have this horrible disease. When I read your blog I cried as I am in that kind of pain right now. Have they ever tried Remidade on you? I have been through Imuran, Cyclosporin and now Remicade? Do we know if it’s working…not yet…but it is showing promise. Lots of new tissue growth etc. I feel your pain and your frustration and disappointment. We will get through this somehow!