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Old 12-10-2008, 12:46 PM   #1
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Join Date: Dec 2008
Location: Charlotte, NC
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rendam1 HB User
Pyoderma Gangrenosum

I'm a 68 year old female and I was diagnosed with Pyoderma Gangrenosum a year and half ago(May of 2007) When I first got the spot on my leg my doctor said it was a brown recluse spider bite...After weeks it grew larger and larger, I was sent to a Plastic Surgeon. He started debriding the wound, which only made it larger. He sent me to an infectious disease doctor. After taking several antibotics and not getting any better, he sent me to a dermatologist. After 3 months of going from doctor to doctor, I was correctly diagnosed with PG. The dermatologist immediately put me on very large doses of Prednisone and Dapsone. Both these drugs caused many side affects (couldn't sleep, very nervous, tremendous uncontrollable weight gain as well as others). After several months the dosage was dropped . I continued on both drugs for months and finally was almost completely healed. I started walking to try and lose some of the weight and my leg became very swollen and caused another breakout. Now the second leison is as large as the first one. I read about a treatment on the Internet called IVIG (intravenous immune gobulin). I asked my doctors about this treatment and none of them knew anything about using this treatment for PG. Finally, I found a doctor who would administer the IV drug (which is really really very expensive, and I don't know if Medicare will pay). I have had three five day treatments over the past three months and it does not seem to be working. I go to a wound care center and they have tried different bandages, artifical skin,, etc. but nothing is working. My Dermatologist is sending me to a teaching hospital in our State to see a specialist and hopefully I will receive some type of treatment that will help me. I have had this disease for over a year and half, dealt with tremendous pain, side affects from the different medications, doing my own dressings every other day and just trying to survive. I've givien up doing simple things because the pain and meds will not allow me or give me the energy to complete simple tasks. I have always been a dancer, but NO MORE. I've always been very active, but NO MORE...I've always been an optimistic person, very upbeat, but the depression is setting in and I am trying very hard to deal with that right now. If anyone knows of a treatment that works, or something that will help, please please let me know. Also, I have been tested for the systemic disases that can cause PG, but the doctors have found nothing...Guess I'm one of the 100,000 in one who gets this disease for no reason. If you have any thoughts or questions, please reply to me and I will answer your questons best I can.

Last edited by rendam1; 12-11-2008 at 08:22 AM.

 
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Old 09-01-2009, 06:06 PM   #2
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Join Date: Sep 2009
Location: Texas
Posts: 14
BebeCo4 HB User
Re: Pyoderma Gangrenosum

I have pyoderma gangrenosum also. Sorry to hear you have been on the same path... Keep the faith I have found some thing that works.

BebeCo4

 
Old 07-13-2010, 10:41 PM   #3
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POLLANAE HB User
Re: Pyoderma Gangrenosum

Dear rendam1: I sympothize with every minute of every day regarding your pain with Pyoderma Gangrenosum. My dear sweet young daughter has been diagnosed with PG. This horrifing rare disease is consuming her beautiful face and parts of her body. The chronic pain has been relentless. We finally got help with the chronic pain at Kernan Pain Management Hospital in Baltimore, MD. Dr. Thelma Wright--please look her up on the net. Psychologist Dr. Natasha Durant is also helping with the severe depression at Kernan Hospital. Neurontin (nerve pain blockers to the brain) and methodone have saved my child's life recently--she didn't know how to go on any longer. We are still battleing the PG with meds--doesn't seem to be doing much. If anything works, I will write you immediately. You are not alone my dear friend. Sincerely, Mom-Pollanae. < edited >. Maryland, USA

Last edited by hb-mod; 07-14-2010 at 02:02 AM. Reason: Please don't post personal info such as real name, email or phone.

 
Old 07-15-2010, 04:28 PM   #4
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Join Date: Sep 2009
Location: Texas
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BebeCo4 HB User
Smile Re: Pyoderma Gangrenosum

So sorry to hear you are suffering; I received Lazer treatment on my ulcer and it has not come back. The name of the company that makes the equipment is LiteCure. Please contact them and ask who has this in your area. I tried Dapsone - didn't work. I got a treatment every day for 10 min. on each area. We immediately started to see results. I was doing very well, & my husband and I went on a vacation - anniversary trip; but by the 7th. day the horrible pain came back - my husband got me back to Austin to get started on the treatment. At that time I was still taking the Dapsone & hoped that it would keep it at bay; but it did not; so my Rumatalogist said - stop the Dapsone we know for a fact it's not working and keep getting the lazer.

I now have no ulcer. I went out with my husband for a special date and I wore some nice shoes (crocs are the only ones that don't hurt) I forgot my leg looks ugly..... you will feel better I know you are hurting!! Praying for you in Austin

Last edited by moderator2; 07-15-2010 at 06:25 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 07-15-2010, 04:36 PM   #5
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Join Date: Sep 2009
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BebeCo4 HB User
Re: Pyoderma Gangrenosum

so sorry to hear about your daughter; I hope you felt my tears and my heart breaking over this news. I understand the pain and depression.... it is horrible. I have not had any more problems with PG. I pray it will never come back ... but there is no promise. the Litecure that my doctor used on me. I received 10 min. of lazer everyday. We began to see results right away. Dapsone did not work at all. Left for trip after 7 days returned because the pain was coming back.
contact the company and see if anyone has this equipment in the area. Praying for you and your family....

Last edited by moderator2; 07-15-2010 at 06:24 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 07-15-2010, 04:52 PM   #6
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Join Date: Sep 2009
Location: Texas
Posts: 14
BebeCo4 HB User
Re: Pyoderma Gangrenosum

I am so painfully sorry to hear about your daughter.... how can I help?? the pain is horrific no one should suffer. Does your daughter have RA? or another auto immune decease?

My ulcer is completely closed and I have not had any more breack out... I know it is always on the back of my mind... please Lord don't let it come back... Contact the company and see who has the equipment in your area. I saw results right away...

... praying for you & your family.

Last edited by moderator2; 07-15-2010 at 06:25 PM. Reason: please do not post websites except as described in the Posting Policy

 
Old 07-18-2010, 09:34 PM   #7
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Join Date: Sep 2009
Location: Texas
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BebeCo4 HB User
Re: Pyoderma Gangrenosum

how are things going for you'll? Does your daughter have other auto - imune illnesses? I found that when I had my lazer treatment, doing ice packes helped with the pain; have you tried that?

 
Old 07-18-2010, 09:39 PM   #8
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Join Date: Sep 2009
Location: Texas
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BebeCo4 HB User
Re: Pyoderma Gangrenosum

how are things going for your daughter? When I had my lazer treatments or when I went to a wound center (doctor there cut my treatments - they were not helping- he had another case about 8 yrs before and said they treated him for 2 yrs with very little results!!)... but I come home and put ice packs and that would help some, have you tried that?

 
Old 07-27-2010, 10:18 PM   #9
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POLLANAE HB User
Re: Pyoderma Gangrenosum

Dear rendam1: I was wondering how you are doing in 2010 with the rare and horrifying disease "pg". I sympothize with all that you have been through because my dear sweet 16-year old daughter has been battleing with this disorder which is spreading over her face and other parts of her body. I pray especially for you and your entire family and friends--because this affects all of us. Your written article is very indepth and informative. I thank you for sharing this information with us. Please respond if you have had any kind of success with any kind of treatment. We will write you if we can find anything that helps. We are praying and i am looking all over this country (us) and the world for any kind of help. Sincerely, your friend, pollanae.

 
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