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Old 07-22-2002, 06:56 AM   #1
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Location: LaFargeville, New York USA
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PICKKLES HB User
Talking Rare skin disorder info requested

Hello my name is PICKKLES and I have a rare skin disorder called Pyoderma Gangrenosum. I was diagnosised over 7 years ago. If anyone has any information on new research being done please reply here. I would really appreciate it. Thank you.

[This message has been edited by moderator2 (edited 07-22-2002).]

 
Old 07-23-2002, 12:24 PM   #2
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Jaytor HB User
Post

I located an article titled: Pyoderma Gangrenosum
Authored by J Mark Jackson, MD, Assistant Clinical Professor, Department of Internal Medicine, Division of Dermatology, University of Louisville.

You can locate this article by doing a search with the title and author. Basically it describes the treatments as the standard immune-suppressing regimens: steroids [prednisone], immune-suppressants [cyclosporine, MMF, etc.] and - something that doesn't appear too often - hyperbaric oxygen therapy.

Hyperbaric oxygen therapy is what is normally given deep sea divers suffering from the 'bends'. It's been recently used as a way of improving the delivery of meds into tissues that typically show very poor absorption such as bone, cartilage and skin.

Couldn't locate any clinical trials on the NIH site for your condition, but something may exist if you broaden your parameters to include immune-related dermatitis and other immune disorders where this condition often shows up as another symptom: inflammatory bowel disease [ulcerative colitis, Crohns Disease, chronic hepatitis, rheumatoid arthritis and myeloproliferative disorders.

Here's the clinical trials site link for ulcerative colitis:
[url="http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=A661F992B4048492 B514C883B16041F4?term=ulcerative+colitis &submit=Search"]http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=A661F992B4048492 B514C883B16041F4?term=ulcerative+colitis &submit=Search[/url]

rheumatoid arthritis: [url="http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=A661F992B4048492 B514C883B16041F4?term=rheumatoid+arthrit is&submit=Search"]http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=A661F992B4048492 B514C883B16041F4?term=rheumatoid+arthrit is&submit=Search[/url]

The Phase II oral collagen study [7th on the link above] looks interesting and novel; unfortunately, it's limited to those recently diagnosed [2 years or less]. Keep an eye on it just in case they find something worthwhile.

 
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Old 04-30-2004, 08:21 AM   #3
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Join Date: Apr 2004
Location: Missouri
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SmilingHeart HB User
Re: Rare skin disorder info requested

Quote:
Originally Posted by PICKKLES
Hello my name is PICKKLES and I have a rare skin disorder called Pyoderma Gangrenosum. I was diagnosised over 7 years ago. If anyone has any information on new research being done please reply here. I would really appreciate it. Thank you.

[This message has been edited by moderator2 (edited 07-22-2002).]
Hello,
I'm sorry to say but I also have been diagnosed with what the doctors are calling
Pyoderma Gangrenosum (PG). I've had two biopsy done from two different area's of the country. each biopsy came back saying Pyoderma Gangrenosum as the diagnosis.
I've been dealing with PG for about 5 years now and still do not know that much about it. I am trying to find others who may have the same diagnoses. Unit now, this is the first post I found even mentioing Pyoderma Gangrenosum . If anyone know's anything about this disease please share with me what you know or experence yourself or know of someone who has it. I do display some the classic signs/symptions associated with PG, but there are many more I display that I can't find any info on and the doctors are really at a loss.
Thank you for any Info you may be able to share with me.
Ali aka SmilingHeart

Last edited by SmilingHeart; 04-30-2004 at 08:26 AM.

 
Old 04-14-2005, 10:29 AM   #4
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Join Date: Apr 2005
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KayeB HB User
Re: Rare skin disorder info requested

Hi,

I'm KayeB. Mine began with a Brown recluse Spider bite in 1996, that was mis-diagnosed for 6 weeks. That took 2 years to heal. Second opening appeared to be spontaneous. We worked 2 1/2 years to get closure. The third incident was caused by injury to the ankle site. We have been treating for over 2 years. Pyroderma Gangrenosum has been diagnosed this third time. It appears to like scar tissue because of poor vascularity. The site listed by Jay Tor gives considerable information that is accurate. Please note non-surgical statement! My Dermatologist says that this doesn't like to be agitated. Anything done that may traumatize tissue seems to help progression. Choice of treatment for me is Prednisone and Colchacine. Antibiotics are used when serios flare ups occur. Please, pay close attention to your general health because your system may be hit in different areas. Can you believe..... Petroleum Jelly bandages? Yes, I am very serious! They don't stick. Use a gauze pad ( several plies thick ) large enough to cover the wound. Cover the Gauze with a light coat of Petroleum Jelly. Then cover the wound liberally with Petroleum Jelly. I use a stretch gauze to anchor the gauze pad. Stretch gauze is very comfortable and may be washed, steralized with vinegar and re-used. Why re-use? It is not just economics. The gauze becomes softer after it is washed. Just be sure to dispose of it when the stretch is gone. Too much pressure equals trauma which is a no, no. Hope this helps.

 
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