Share this:

Pyoderma gangrenosum

Posted by @nana0f1 in Digestive Health, Jul 12, 2011

Is there anyone out there that has this? What has been your experience with it? My 26 year old granddaughter has it ans has for nearly 3 years now. It started right after she had a bout with liver inflammation and they removed her gall bladder. I noticed the first round red area on her hip 3 days after her surgery. I thought at first that it might be a bed sore and the hospital staff had left her on her side too long. It took over a year to finally figure out what the problem was and then it was me not her DR's who discovered what was going on. How do you deal with the pain and other symptoms of it?

Tags: Skin Conditions


Posted by @neauxless, Aug 10, 2011

Yes I do. I also have crohns. The only thing I have tried that works is prednasone(steroid) everything else had no affect. I am going to the dr today and on monday the 15th to see a skin dr. hopefully they will tell me something new! I will let you know!


Posted by @nana0f1, Aug 10, 2011

Her pain is incredible. We have been to Dr. after Dr. and very few even know what this is. I suggested steroids and thalidomide as a treatment but they generally said that it was extreme to use those and they'd have to research it. She does have a Dr.'s appointment tomorrow. Hopefully this one will help. Her upper arms and upper thighs and her buttocks are so scarred now. She looks like she got in on the losing end of a battle royal with a pit bull. Wishing you well with the skin Dr. but from what I have read about this disease skin grafts were not a viable option since the body would attack it and reject it. Please let me know what you find out. Every bit of information that I can get to help her is another bullet in my gun aimed at this disease. We have found that if we can keep her internal organs functioning correctly the way they should her abscesses and such are easier to keep in check. Wishing you well.


Posted by @neauxless, Aug 11, 2011

The reason most dr.s wont use steroids is their long term side affects. Well the long term affects of PG are that she will have no skin left, which is less adverse than the side affects of the steroids. I think the doctors are covering their asses from lawsuits instead of being concerned with her . You cant sue them for something they didnt do.(treat your granddaughter) They tried creams and other medications on me that didnt work, it only got worse. Find a dermatoligist who knows or has seen PG before, or find a dermatoligist who cares about people and beseech them to find a collegue who can help you. I know how painful the PG can be, so dont let them brush you off, be strong and take care.



Posted by @nana0f1, Aug 11, 2011

Mike: thank you. We are trying very hard to get this under control. She is only 26 and has had to allow her mother (my daughter) take over raising her daughter for her because she can't and I have been using all my energies trying to help her with very little left over for the child. It has been devastating watching my granddaughter go from a vibrant, healthy, beautiful young woman to a scarred, scared, and lonely sick person. I would almost rather she had cancer than this disease. At least with cancer the Dr.'s would be more willing to treat her and she would have a better chance at recovery. We are looking and searching for a Dr. who will treat it but we have been labeled as being Doctor shoppers. I have to admit you are the first person who has even suggested maybe going to a dermatologist and i will most certainly start calling around to find one who knows what is what with this disease and be willing to treat her.
Be safe in all that you do.


Posted by @pattyboo, Oct 6, 2011

i have pyoderma gangrenosum i am seeing a Rheumatology docter. I am on 40mgs of Prednisone and 100mgs of Cyclophosphamide a day. Plus i get IGIV Therapy every 4 weeks.No break out in 4months.Hope this was helpful please let me know.


Posted by @pamelaj831, May 8, 2012

I have suffered from Sept 2011 to present May 8 2012. My family doctor had me coming in every 2 weeks saying I had a yeast infection, from sweating. I had yeast infections before that after a couple days would get better with creams. Finally in March she sent me to an infectious disease doctor who he sent me to a dermatologist. A biopsy revealed pyoderma gangrenosum. They put me on dapone. I go back on the 15th of May. Now out of the blue I have a large spot on my back that is itchy, I don't think it is the same thing though, because the ulcer's never really itched, just very painful. I also am using triamacinolone .5%, but will have to stop on the 10th. I feel like this is just maybe keeping it at bay. Basically after I have a boought, it slowly tries to clear and another happens. This has been extremly mentally draining. I knew I had never seen anything like it, that is why I am so taken back that my family doctor didn't see the difference in an ulcer and a yeast infection. It is scary that not many people get this and it is scary that not much is known. Not one of the 3 doctors I have gone to have suggested finding the underlying cause with test, so I had my family doctor do blood work, all that was alright. So I have read it can come from nothing. Scary yet again.


Posted by @teebird, Oct 16, 2011

Hi i just signed into this tonight, I have pyoderma gangrenosum.I don't know what kind of test gave them that result. I have this red holey pussy mess on my leg since June.7 doctors later and 5 antibiotics and nothing no change looks worse really!!! The more i read i'm scared .i'm 5 months into this now and was just put on dapsone,I had blood work done but not sure if white blood cells was tested. My primary doctor last year said my vitamin D was very low and said i was prone to everything if i didn;t get it up higher the normal was 20 and i was 14 . what kind of test should i be having ??? there is another problem that caused this ??


Posted by @marieworon, Oct 29, 2012

I have both PG and UC (ulcerative colitis), just diagnosed last month and I've been blogging my experience: Pain is a huge consideration and one that should be discussed with the doctor. If your doctor is not able to help, get another one and one who is very well versed in pyoderma gangrenosum. My suggestion is to find PG discussion groups with others as well, there is one very good one on Facebook that has helped me immensely: On this board, there is a discussion about pain and what other members are taking for it. My PG had been debrided twice before it had been diagnosed; however, it is no longer growing so is not nearly as painful as it was in the beginning (at that time, I was on IV morphine and 2 percocets every 4 hours). I am now able to manage it with 2 T3's at 6am and 12pm, and 2 T4's at 6pm and 12am, using 1-2 percocets for breakout pain (rarely now). The codeine in the T3s and T4s seem to help considerably. I am also on prenisone and Asacol (5 Amino Salyicylic Acid), going to my GI doc tomorrow to discuss dosages as I believe he is dropping my pregnisone too quickly (leg pain seems to increase weekly as the dose is dropping).

jgmclaughlin likes this

Please login or become a member to post a comment.