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

Hi Everyone,

I recently signed up on the forums when I came across this site while researching PG. I don't see many posts on PG, I was just wondering if there is many people out there with this disease? If you do have this disease, how do you deal with working and controlling the pain, or can you not work while having a flare up? How long have you had this disease? Do you have another underlying disease? (most people with PG also have an underlying disease that is associated with PG, example: Crohns, IBS, UC) I just got diagnosed with PG 2 weeks ago but it took months to get it diagnosed. The pain that is linked to PG is horrible. Im currently on Fentanyl (pain patches) and Hydromorphone. Along with PG my wounds (which I have 3, 2 on my lower left leg and 1 on my lower right leg) are infected with MRSA (staph infections) so Iam also on antibiotics. I also go to a wound clinic weekly and they wrap both my legs to keep down swelling to help the healing process.

Four days ago I started Prednisone(steroids) a medication known to help PG patients heal. The side effects that I have read about this medication is terrible. However, my dermatologist says that I will be short term so I shouldnt have to deal with the terrible side effects. She is going to put me on another medication after I get finished with the Prednisone, I cant remember off the top of my head what that medication was called but I will keep everyone updated once I find out.

Last week I got a colonoscopy to test for Crohns and UC, the GI doctor says that from what he saw he didnt think I had either one, but would find out more with the biopsy report that he would get back this week sometime.

If you have PG ...please tell me your story, let me know how the healing went, if you ever did heal, do you have flare ups often? etc. I have had my wounds since Aug 08, Im tired dealing with this
disease has been so depressing for me. I keep trying to stay positive but its hard after almost a year and not getting any results. I know I have only been told for 2 wks that I have PG and it may take time to get progress going on the healing, but its hard to stay positive when its been so long dealing with the pain :( and knowing Ive been off work for 11 weeks and I cant afford to lose my job, Im a single mother and my leave of absense runs out next Tues.


Thanks for listening guys!

Post Edited By Moderator (Ides) : 6/5/2009 5:54:11 PM (GMT-6)

Thanks Ivy! :) I have read so much on PG, and everything that is even associated with it. I really have learned a lot the past few weeks. Sadly I haven't been able to find any support groups for this disease and I know there must be so many of us out there, I mean sure 1 out of 100,000 isn't much, but I would love to pull together a few people dealing with this, maybe we could learn to lean on one another to help us get through the horrible journey that we have before us.

Some of the threads I found through that Google search are quite recent, so I hope that you'll have some people to talk to within 24 hours or so.

I'm not quite sure where you live, but it might help you to know that this is traditionally a very quiet time here at HW: things start to get more lively in about nine hours, when the Americans wake up, so I hope you'll have some answers soon after that.

Best wishes,

Ivy.

Im American, Im in Washington State, and If I dont get better soon, I imagine I will have to quit my job (which I love and adore) and move back home to be with my family there, which is Texas lol (THATS A FAR DRIVE BY THE WAY)!!!

Im worried about how to deal with the pain and still hold my job down, I work for a big company, my job is behind a desk but also very very fast paced and very full of responsibility. I'm a Business Systems Analyst for T-Mobile, USA. The policy is no pain pills at work, so Im in hopes that I will be able to keep my pain down with just over the counter meds.

Hi Janicea,

Thanks so much for the reply. My dermatologist offered me the local shots of Prednisone it would be faster healing, but my wound clinic doctor requested from me that I not do that because it may slow her treatment that she is doing to me down, its like a catch 22 with this disease..Im darned if I do and darned if I dont it seems. My wound clinic will be trying to do the temp skin graft soon again, Ive had it done once before but didnt have good results because it was before they knew that I had PG but now that Im on Prednisone they think it may be a good thing for me. This new skin graft product is made from believe it or not baby foreskin cells, its a small layer of cells that they put over the wounds and what this does is it encourages my skin to start reproducing and start healing, its actually pretty awesome how it works. However, it didnt work last attempt, it did seem to help with the pain but other than that it didnt really start healing, but they say thats because I was getting zero treatment for PG because at that time they didnt know I had PG.

As far as the MRSA treatment, currently Im on 2 antibiotics, and when I saw my dermatologist today she wanted me to not do oral treatment but for my wound clinic to order antibiotics via IV. After that appointment I went to my wound clinic appointment and they said, no they wanted me to stay on the oral pills (which makes zero sense to me) and to wait to start IV treatment until I see their Infectious disease specialist, this to me is retarded...we already know I have PG and we already know I have MRSA ...what the heck would a specialist do for me now? LETS JUST ATTACK THE INFECTION with something strong!! wouldnt you say? Ive had this infection before in the wounds, and IV is what helped!!!! Sometimes doctors annoy me :( Why put this off any longer, why not just do the IV like my dermatologist requested, she would order it for me at the hospital but for some reason she cant order it, it has to be my wound clinic doctor or my family doctor (which Im going to call about this since he knows all about my condition)

Any advise on pain control when unable to actually take your prescribed pain meds? Since Im going back to work next Tuesday Im so worried that I will not be able to function normally w/out some kind of pain control :( You know how very painful PG is, to me its 100x's worse than even having a child!

Thanks for listening Janicea, and I wish you luck on your PG...I hope that they find a cure for Crohns and PG very very soon :)

I dont get randomly drug tested at work, and thanks for the great idea about going to HR and explaining my story. My pain is horrible, it hurts all the time....the wounds are large.....and because they are on my legs I would assume thats why they hurt so much, my legs swell, this is why I have to keep them wrapped to keep down the swelling. Below is a picture of them from 05/29/09. PLEASE DONT GO to the link if you cant handle seeing nasty things, my wounds are NOT pretty :( and you will be able to tell by just the picture how painful they would be, or least thats what my family has said when they have seen the pictures of them.

I hope this picture doesnt offend anyone :(

http://i42.tinypic.com/2lt4i0.jpg

The wounds are almost touching now, but hopefully since starting Prednisone we can get it under control to stop the growing progression of the wounds.

Hi Original,

Thanks for the reply...I hope that you start to heal and they find some kind of treatment that will work well for you. Thanks for sharing your story with me, it really does help to know that there is others out there fighting this battle with me, although I would NEVER wish PG on anyone, not even my worst enemy (not that I have any) but you get my drift. I will keep everyone posted on how things go and what steps doctors take with me and treating my PG, and I hope others will do the same, maybe we can help eachother, hearing how others are treated may give us ideas to give to our doctors.....

also i looked at your pic, all that red looks like staff to me. once that gets better, I bet you're on the road to improvement. hang in there. I think the steriod shots around it are a bad idea based on my experience. As nuts as this sounds, after a bunch of other treatments, simple silver sulfadaine cream is working (slowly) for me if I pack it and keep it covered. hugs!!

What type of treatment are you doing? is it a moist covering? packing it? or are u being advised to keep it open?
I have done a lot of different treatments and am always curious to know what others are using, to see if there is something new, that I can find, to give this thing a jump start into healing more.

On a side note, you mentioned having kids,I have 2 daughters, the youngest was 16 when this all started and still living at home so she went thru all the hell with me. The PG she has seen and is horrified by it.
I had one on the instep of my left foot for a year prior to this one. I almost lost my leg because of the infection in it. I was unable to walk and had to use a wheelchair for over 4 months. Thank goodness I am able to walk now, with a totally different gait than before, but hey its walking LOL.
When she graduated, I was forced to move in with my mom....from KS to PA....due to not being able to support myself an ex who fails to want to pay support( thats a whole other story but getting resolved now LOL)

Good luck with the HR area. I was a stay at home military wife so I never dealt with that end of things really. But I'm always here with a listening ear if you need one.
Take care.

I was on the wound vac for the first 2 weeks, after that went to the Restore Silver( which is like a brown mesh material), then went to silverlon, then to Hydrofera Blue, and now I am using PolyMem. Some of the treatments are changed 3-4 times a day others stay on for a day or two, with just the gauze and kerlix beingchanged out. I have become a pro at the dressings, at the wound clinic they just let me do it. Its easier for me to control my own pain than let someone else mess with it.
My daughter has been an amazing support. Sadly shes scared she will end up with Crohns and PG. I pray no one else ever has to deal with either sometime in the near future. When I was diagnosed with the PG I was told how rare it was. To this day its something a lot of the drs dont know much about but its becoming more known sadly.
Take care....keep in touch!!

Original:
do you any feelings about Restore Silver, silverlon or Hydrofera Blue, or PolyMem?

HUGS to you too!!!

Hi, I have Crohn's. I am 29. - I had a ileostomy created July 04 - as a result of a very badly ulcerated colon and battling the disease for two years. My stoma became my best friend - I had no problems until a very stressful period of my life in Jan08. I started to get a raised bump around my stoma in Feb 08 and it erupted while having an antibotic infusion in Mar 08. Doctors thought it was infection etc.. and they just kept giving me flagyl. It was so sore and I was finding it impossible to put my bag on because of pus etc... it was so sore I couldnt walk. Eventually after three weeks of tests my surgeon realised it was PG (I think he researched symptoms) I was told the area was so bad I would have to have stoma moved to my other side (disaster because it doesnt always settle on the other side i was told). Then a consultant wanted to try infiximab but I'd had a reaction to it before so he said I should try HUMIRA (adalimumab).
I was willing to try anything because I really didnt want that long op again. Within a day of taking the loading dose the pain had gone!! I self injected once every two weeks and as the injection started to wear off towards the end of the second week the pain would come back - but then Id take injection and pain went away. I developed PG at another area of the stoma site but it didnt spread like the other wound. Then in Aug 08 I developed fistulas at both PG sites that were healing (typical). However they havn't got any worse than when they developed and the PG has cleared there (pus stopped at both sites within a few weeks). The fistulas are annoying but I have faith they will heal in time.
Jan 09 felt funny - I could feel my crohn's flaring - had pains - then noticed my stomach going very red around belly button area and I thought I had a hernia because it was so sore. I made emergency appointment and the night before I went to the consultant I noticed a few purple spots (I knew then it was the PG) I pushed against the area and so much pus drained out - there were two holes after that - consultant told me to change to once weekly on humira and I took a course of steriods orally - I had no pain in that PG site it healed in a few weeks and all thats there now is scarring.
So humira has been a life saviour for me and at the moment my crohn's is flaring so it helps with that as well. The thing about it is that it only helps the PG and crohn's not to get worse when they flare up (which is good) but it doesnt cure the diseases. I also noticed that the three areas where PG struck where my weakest spots (stoma and scar on belly button from op).

find a really really really really good dermatologist. A lot of them learn in school that you have to do a punch biopsy (with stitches) to identify that they are not anything else (a diagnosis of exclusion).... older folks with more experience, I hear can just look at a little skin at the edge of the lesion with a microscope. It's super hard t find a derm that's ever seen it. Us guys on this thread and whoever joins it, will probably be the largest group of PG sufferers in one place in the history of mankind.

My doc was like NO PUNCH BIOPSY. Bless his little heart.