Dealing with Pyoderma Gangrenosum! Need advise! Do you have PG, or anyone you know?!

 Penny,

  For probably over a year,I couldn't wear my compression stockings either due to the ulcers or the dressings (kerlix type) that were too bulky as I wasn't able to pull the stockings over the dressing. So when I was switched to the wafer-thin type in the wound clinic, I was able to use the compression stockings again. I usally wear them 6-7 hours/day, let my legs to open air for a couple hours in the evening,then put the Urea 40% and wrap for the night. I take the dressing off next morning, then put stockings back on around 10am.It keeps the swelling down,they still hurt some.The stockings also help with blood circulation of my legs.When I started in the wound clinic the nurse specialist put a plaster type wound covering on both my legs,now they were snug,then came back after 10 days or so cut that one off,and put a new one(s) on.They helped alot,after a few times with that,I started to see some healing.

  I have a special book,actually it's an "Encyclopedia and Dictionary of Medicine,Nursing,& Allied Health",it has good medical information in fact I looked up Pyoderma it reads "Pyoderma Gangrenosum:A rapidly evolving cutaneous ulcer/ulcers,with undermining of the border.Once regarded as a complication peculiar to ulcerative colitis,it is now known to occur in other wasting diseases". Also adds "Any purulent skin disease". That was actually first time I looked it up in this book. So hope you8 get some good news tomorrow,that is with some healing. I know exactly what you mean about wounds not liking to be messed with.Just seems like a viscious cycle,get the things healed and lessens the pain,then somewhere down the line it rears it's ugly head again.Just have to try and stay on top of it,and keep a close watch on them. Well Good Night,& Good Luck Tomorrow!!!!!!!!!!!!!!!!!!.

  Hey Penny,

  So very sorry to hear of your your experiences today with your providers. I understand where you are coming from about I.V antibiotics, the wounds do heal in less time with that treatment course. If you'll look back at my last post,on word in the definition of PG seems to stand out.."evolving",that one word itself is a "cotinuous and progressive changes".That in my mind is what makes PG such a challenge to get healed,when you get an area that shows even a progress,then it seems other area(s) either show beginngs (bug bite appeareance),and/or look worse in other areas.That's what I term as a viscious cycle,seems to be no end to it. For heavens sake ,they could put in a heplock and set up a time fitted to your schedule for doses of I.V. antibiotics. Well you at least got the day behind you, hopefully tomorow will be better.

 You have a wealth of support,I for one don't mind being a sounding board,the great thing about these forums there is always an available ear,and folks who understand what you're going through.

 I have found sadly, sometimes doctors tend to "minimize" what is going on with their patients,usually they want to get in their 15 minutes with a patient,and move on to next. When I go to the doctor,I try write down a few questions,usually in an order that I feel important and I say "I'd like to run a few things by you". We as patients sometimes have to play detective by doing research. Penny,what has been  the readings of your RBCs? Just curious.

 Best of wishes and hugs to you as you venture back to your job tomorrow,my prayers are right with you!!!!!!!!.

 Remember We'll be here for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 Good morning janicea,& all,

  Thank you so much for the welcome janicea.about the "Urea 40%", it is also under the name of "X-Viate 40%",it comes in a large tube,and I put it on at night before bed,then wrap both my legs with kerlix dressing,then next morning remove the dressing then gently wipe down my legs.This is supposed to help dead skin cells fall off,softens and moisturizes the skin.,also help remove dead tissue in skin wounds to help wound healing.My dermatologist prescibed it. I see you are using silver sulfadiazine,I was on that at one point about a year and a half,it helped with the healing,but it was a slow progress,I do know that particular treatment is used on burn patients.Hope it works for you. Near as I can say is since 2005 alone, Iv'e had at least 3 on/off reocurrences with PG, it tends to be very frustrating,get them healed then another flare-up.

  During my last Dermatology visit, I had a small area just below my right knee,he advised to keep an eye on it,since then I have noticed a couple more places especially around my ankles that look like little "bug bites",and they have a liitle pain to them. I have a colonoscopy due this fall,last one the doctor removed 2 polyps,one determined to pre-cancerous.But anyway,will write more later.

  Oh BTW it is Mark (Mike is ok,I 'll answer to either one) Good Day to everybody!!!!

 Congratulations on your return to the working world!!!!!. I have usually found the hardest part is getting back into the groove of things,especially when being off for any length of time. Another positive aspect is when one is occupied with their job tasks,it allows one to take their mind off the pain. I was just curious about RBCs,,as mine usually runs in the 10.0 to 12.0 range, and doctors usually express some concerns about consistent low levels. The cause of the low levels,is due to Thalesemia Minor (a form of Hemolytic anemia),actually the condition is considered an "inherited trait" that affects red blood cell formation. The condition is usually found in persons of Mediterranean descent,just another gift passed on by my ancestors.It's usually a mild type of anemia that doesn't require any treatment.

 Have an appointment with PCP tomorrow,wasn't scheduled to see him until the last of next month,but when I came across my old military service medical records (Diagnosis of PG),as this medical history my PCP is not aware of and I want to make him aware of it.Perhaps I'll ask him about another skin biopsy(the last one I had was in 1984),not really looking forward to that one but a sometimes necessary evil.It's funny one of the doctors I used to work closely with specilized in Internal Medicine then left for North Carolina to further his studies in Infectious Diseases,this would have been right down his alley (Oh well).Since I live in West Virginia,have to utilize resources that are available.The doctors I have through the V.A. healthcare system are great. about the mole you mentioned Penny, I would just keep a close watch on it especially if changes shape,keep your provider aware of it.

 Anyway,enjoy your venture back into the working world,main thing Keep a positive attitude,as that's half the battle.

HUGS!!!!!!!!!!!!!!!!

Mark, 

Im not sure to be honest with you, I would guess that the first step is to talk to PCP or even the Nurse Practioner would do, and then just go from there.

Today is my 3rd day back to work, and its not going to well today.  Im in alot of pain, and feeling very very fatigued.  I have caught myself almost falling alseep at my desk.  (and yes Im at work right now posting on this forum) lol!

Im out of steroids and have called my dermatologist for the past 2 days trying to get a refill on meds and Im getting no response..pretty annoying to say the least.  I left another message letting them know Im currently out of meds, and I hope they actually call me today ...geez. 

I hope I get through this day ok, I feel as though I could lay down and sleep for hours and hours.  Oh yeah another thing, I have  tons of symptons of Chrons or UC..but my GI says he doesnt think I have either...the one thing that I never had as far as symptons was blood in my stool...however today that has all changed, this morning I had that sympton, not alot but I did notice some.  *sigh* I have an appointment on the 23rd with my GI.  so I will tell hima bout that and see what he says.  I just feel like most doctors blow me off, they seem to drop the ball alot on me :(

Wow during this post my Dermatologist office called me, and she is making me wait until Monday to get any more steroids, I believe she is gonna put me on Cyclosporine, BUT ..she refuses to get me started and is making me wait until Monday, which is really stupid ..I hate that I have nothing that is currently helping my wounds to shrink or close :( so lets see, I will go 5 days w/out any meds that will be helping my PG ...this means my wounds may just be back where they were by the time I go to see her on Monday.  I may just flip out on Monday in her office, Im getting burned out on having doctors who have no bedside manners and no concern for their patients well being.  Seriously this is getting old and fast.  I may fire this Dermatologist...Im sick of dealing with doctors who dont give a darn about their patients.  Her excuse on why she isnt going to go ahead and prescrib Cyclosporine is because she wanted to talk to the infectious disease specialist that I saw on Tuesday...well I could easily tell her what he said, and tell her what a moron he was...that was the guy who wouldnt give me IV antibiotics for my MRSA that I have in my wounds and wants me to stay on oral meds until my wounds are completely healed (which could be forever)...Why she has to talk to him is beyond me ..but I have fired him ...lol and she is close to being fired too...

Enough with the negitive stuff...I apologize, but this entire situation is really ticking me off :(

Thanks again for listening and letting me vent my frustations :)

I started thinking more and I think there is also blood work that can specify certain antibodies such as IgA, IgD,IgM,IgG andIgE.  Autoimmunes can run in families. 

Kirei-  was glad to hear you were at least having some good days, but I know the frustration that comes along with having a bad one after feeling some better. Odd the drs making you wait.  I've always had to taper off of steroids, I have always been led to believe its dangerous to go cold turkey.  If there are other dermas in yoru area, it cant hurt for you to call and start being seen elsewhere.  Remember its YOUR dr, YOU pay for it, the least they can do is listen. 

I had 2 drs who didnt listen...they let me go about 18 mths without doing much testing.  And I did nothing but get worse.  

Hoping you have a better tomorrow.

Hugs to All that deal with this %@#*^  disease.

 Thanks Ides,just one of those things I was curious about,I saw the listing.It's nice when the moderators chime in once in awhile,just helps keep this organized.

 Now on with Part 2...Well Penny at least you got that part behind you,here's wishing you the best as you continue on. Has anybody here noticed their skin texture with healed wounds?. I have noticed on my left ankle , I had an ulcer there,but the skin is very thin,gotta keep an eye on that place,still pretty sore. Hope things work out for you on your appointments.Hope the weekend goes well for everybody.

 HUGS FOR ALL!!!!!!!!!!!!