For Those DX With Pyoderma Gangrenosum...????????

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Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/25/2008 2:55 PM (GMT -7)   
 Just wondering if you would take a few minutes to post your PG story
How you were DX
When DX
And what they look like when broken out in the sores
The reason I ask is when I first came here I and one other I believe had been DX with PG
Now the numbers are growing and it is a bleeding painful and debiltating DD that goes along with CD or UC
 
Thanks for your time all....Not a survey just some questions i have
turn
LYN


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 9/25/2008 5:47 PM (GMT -7)   
Hi Lynn....I was diagnosed with Pyoderma Gangrenosum (PG) almost 1 yr ago. I had what looked like a bit on the front of my calf, just a red bump. Thought nothing of it until it started to get bigger and began pussing. I went to my primary MD and had 2 cultures done as they were convinced it was MRSA.  I took 3 different antibiotics during this phase, none of which helped. After this, of course you wait for the tests and the first results are neg so they have me come for another, still convinced it is MRSA and then wait for the antibiotics to work.  At this point the "bite" is now 2" x 2" and growing, pussing, purple border around the wound, I need to cover it with a large gauze pad and tape it hurts to be open and against clothes.  So then I am refered to a infectious disease MD. He tells me he believes it is PG, but I need to see a dermatologist for an official dx. of course more time is going by and its getting bigger and grosser. The dermatologist does a biopsy, goes right in the center of this wound.. hurt like a devil. After the biopsy my foot and ankle swelled so much I could barely put weight on it and I went out of work for 6 weeks. The results of the biopsy come back and he wants to do another biopsy and go deeper into the tissue to rule out anything more. I tell him NO, as 3 months have passed at this point and things are getting worse with no treatment to help yet.  I tell him I want to be treated as having PG. So i start 60mg prednisone, the evil enemy. I stayed on this and at 30mg began 3 Remicade infusions to help close the wound completely. I closed by March, almost 4 months later after startng the pred. The kicker was when I went to the GI after the biopsy for a scheduled f/u he took one look and said thats "pyoderma ganrenosum". I then realized this disease will impact my life in ways I never imagined. I also learned the GI is my starting place for answers and referals.. looking forward to hearing other stories. I am having dinner in 2 weeks with a woman my age, 30ish, that has Crohns and PG and lives in my area, we heard of eachother through mutual friends. Looking forward to that.

29 Year old Female. Dx with Crohns 2005. Currently take Imuran 50 mg. Had 3 remicade infusions which put me in remission.
Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 9/26/2008 9:40 AM (GMT -7)   

My problems with PG started mid Feb 2007, it went from looking like a spider bite to a fist sized lesion within 5 days; it was on the arch of my left foot and I could bear very little weight or pressure on it.  Went to a dermatologist, who also did a biopsy (which I agreed hurt like the devil) but he was pretty sure it was PG with me having Crohns. He gave me an ointment to put on it and said to soak it in warm water 10 mins a day and to keep it covered. The pain that we feel with PG is unbelievable…if you have not had it you have no idea the excruciating pain. I also developed ¾ smaller ones on my foot that thank goodness never erupted.  It never totally healed completely until about July but still to this day, the scarred area will have cracking and issues esp., if I have been on my feet a lot in a day.

 

My second HUGE prob with PG was the last week of Aug of 07.  I had been doing some cleaning out of the garage and doing some yard work, and thought the redness and lil thing that looked like a bite was just from that. Boy was I wrong.   It got tender and red, and I thought prob just slight infection.  Within a week, my whole right calf exploded, it was to the point I could not walk or get out of bed.  I was taken to the hospital and was listed in critical condition…(hit a flare in that week too so I was down to 87 lbs…my norm is about 120).  They had to debrieded my calf; packed it with the wound vac (another hugely painful ordeal) and told me that they thought amputation was probably my next step. I had to come home in a wheelchair and a walker, and they did not think I would ever walk again (a very dark time).  Thankfully I did walk again in Jan and that was with the aid of crutches.

 

 To make a long painful ordeal (with pain being ignored, a dr that dropped me from care due to me saying I could not afford meds and a feeling that some in the health profession just are talking heads with no emotions) short they wanted to do a skin graft, but due to my having lost so much weight, they would have had to take my entire thigh skin to complete it…. with PG tho, they were apprehensive that either wound would ever heal.  So at this point a year later, it’s slowly moving.  I went from having only 2 ½ inches in the middle of the back of the calf being the only part being considered good to now the sore is about 7in by 7 in . They feel it could be another year for it to close.

                   *Keeping fingers crossed to never deal with another*

Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/26/2008 3:41 PM (GMT -7)   
Thanks so much for posting
I have had this for more than 14 yrs now
It took over 9 yrs to DX it
Taking biopsies dont tell you anything
Nothing grows that is why they do rule it out from other DD with biopsy
I have only had luck with Methotrexate.......folic acid and believe it or not IV antibiotics
when they are real bad
I have been down to 88 lbs
I have almost lost a finger and a foot to this
IT is the most painful thing as you know and it is becoming more prevalent amongst CD ppl and UC ppl also get this

I am really sorry you have to deal with this as well
It is hades to live with
The scars I have are unbelieveable
I have never had them on my trunk but I have had them everywhere else........

I have also had the one on the calf and believe me I was crawling
I have had many an episode
Usually 3 to 4 or more per year
TRAUMA and STRESS will also make them come out
I have really done my homework on this as I was so terrified

I know I have 2 lil ones know on each foot and by the ____ I hope they dont fully explode

If you google "My Pics Of the Pyoderma Sores I Get" you should come up with some pics of mine

Again we are in this together
I truly do understand and I am so sorry really sorry and it hurts my heart to know others have to go thru this bleeding awful pain

Email me any time

God Bless ......
I hope you dont have anymre outbreaks
**Btw my doc has me also on ativan when I am blown out to stop the blood from flowing or actually boiling to the point of a breakout
Another autoimmune gift...........LYN  sad

The next DD I was DX with is Fibro


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

Post Edited (Howlyncat) : 9/26/2008 4:45:36 PM (GMT-6)


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/26/2008 8:12 PM (GMT -7)   
Geeez guys my heart really goes out to you. I dont have PG , at least for now. I do have a rash I have been fighting for some 3 years now but it is just a great itch and no real pain. Its still a mystery but the doc thinks its crohns related. I hope you guys can get through this and have no more flare ups.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 9/27/2008 10:32 AM (GMT -7)   
OriginalAreU how were your lesions treated ? You mention a cream thats was used, did you use any other meds or treatments?
29 Year old Female. Dx with Crohns 2005. Currently take Imuran 50 mg. Had 3 remicade infusions which put me in remission.
Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 9/27/2008 12:14 PM (GMT -7)   
 
The one on my foot was treated with a cream that had steroids in it. Its here somewhere and when I find It i wil post name.He also had me keep it covered with gauze and tape.
 
The one that is so big has gone thru a long list of things......started with the wound vac, and that didnt last long.  Then I was moved to Silverlon, then Restore with Silver, then hydrafera blue, and now I am back with the Restore with Silver.
 
Once those are placed on the wound, I place 4x4 gauze squares to cover it then a layer of abds and then the kerlix to keep it all in place.....if I am going to be out and about I add an ace bandage to reduce the swelling ( a tad ayways) in my foot.
 
Been having a lot of sleepless nights lately with pain and ache...they say that is a good sign of nerves growing...so I am hoping!! confused
 
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 9/27/2008 6:38 PM (GMT -7)   
Thats interesting that you were treated with all topical measures. I started with a topical steroid cream in addition to prednisone. You never took prednisone for this or other oral meds? I hate prednisone so much. We have a love hate relationship going. At times it has been my only relief but the side effects are so terrible. Its interesting to see how it is treated with everyone differently. Do you guys currently have any open areas? I thankfully do not just a large scar or my battle wound I call it.
29 Year old Female. Dx with Crohns 2005. Currently take Imuran 50 mg. Had 3 remicade infusions which put me in remission.
Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/28/2008 5:57 AM (GMT -7)   
I also have been TX with a cream called PROTOPIC but it burned like hades and I was also on pred
The one on right ankle is broke out in full force
Morphine does not even touch the pain

THanks Sniper
I would not wish this on anyone
I was hoping your rash would have healed by now

I have never had the sores be itchy

IT is not bacterial so they have told me ..but the IV rocephin helps
I was on IV Vancomycin for about 3 mths or more and because of it I have lost the hearing in my right ear ...my doc said it was from the vanco as did the GI and ENT

I wish you all the best and I am so sorry you too have to deal with this

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 9/28/2008 2:28 PM (GMT -7)   
  I currently have the right leg wound still open  but at least its down to a 7 in  x 7 in  size.....
 
I dont think anything touches the pain.  They tell me its due to a high pain tolerance.  No its called this thing hurts like Hades tongue
 
When I have been hospitalized, I have been on IV steroids and antibiotics, which seem to help it heal faster, but no one seems intrested in keeping it going once I have been released from the hospital.
 
Its always good to get info from others and know I'm not the only one out there with this  ((((((hugs  all  ))))))))))))))
 
 
 
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/1/2008 12:12 PM (GMT -7)   
MIne on the ankle has gotten huge so has my foot
I keep it elevated 99% of time
But I have a theory
"If ya dont use it
Ya lose it " lol
Painful is so right

I have been told NEVER to cover them the air will heal it better

Some places are using UV Beds or whatever ya call them ( tanning ) to help heal them as well

MY doc will not allow this

Again because it is not bacterial
It makes no sense why IV antibiotics are used or oral but for me they help out as does the pred.......
I am on Rocephin for them now the other one is okay but on Sunday I banged the other ankle on a basket of all things.........
And thus started the vicious circle

PPPL llok at you like you have a contagious DD happening but NO way is PG contagious and if they ask what all the scars on my arms and legs are from I either will educate them or depending on their reactions just say I have been burned

I am so sorry we all have to face this...........
WE will get thru it
TOGETHER.........
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    


paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 10/1/2008 1:44 PM (GMT -7)   
Do you wear any leg protectors when you are healed up? I have thought about it. I work in a nursing  home and wheelchairs are perfect ankle & calf height which makes me nervous. At this point I have only had the 1 break. But I am scared to death any time I get a bump or bruise on these legs. The only time I covered it was at work or in bed b/c if my pants or the bed sheets touched it I would go through the roof. One time my husband moved in bed and the sheets moved and I almost clobbered him it hurt so bad. My eyes water even just at the thoguht of that pain... It is so awesome to have this site as a resource for us b/c this is so rare. It helps to know someone has on idea of what we are dealing with. Fall is making my Crohns act up now, I had a flare last month and last night I was up most of the night with that vicious stomach pain, but today I fell good just tired out...I am hear if you guys need me..

29 Year old Female. Dx with Crohns 2005. Currently take Imuran 50 mg. Had 3 remicade infusions which put me in remission.
Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/1/2008 1:53 PM (GMT -7)   
I have hardly worn protecters but I will if
I am going out and worried about banging the legs

TRAUMA to the body ( like the slightest bang) can cause these D things to come out

I told my doc to wrap me in bubble wrap

Sometimes I just get so bleeding angry and frustrated at this PG

I owned my own retirement home but had to sell it due to the PG and CD as well as the fatigue

I MISS it so much

Take care of yourself and good for you that you know enough to protect yourself
from bangs ( especially w/c and bedsrails)

LYN

LYN


  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

Post Edited (Howlyncat) : 10/3/2008 6:11:01 PM (GMT-6)


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 10/1/2008 2:08 PM (GMT -7)   
I've never heard of trauma to the body bringing about PG...I have had it and the pain was unbearable. I can't believe someone would say such a thing as "a tolerance level to pain"--what bull$#!%!!!! They have obviously NEVER experienced the pain to know what the hell it feels like!!! That kind of insensitive and ignorant statement really ticks me off! I hope you all currently suffering heal up quickly.

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 10/2/2008 7:28 AM (GMT -7)   
 
Isnt it odd you are told to keep yours open and I have alwasy been told to keep them covered? Such contradictions add the fustration I get with this stinking disease.
 
I could never leave mine open , I would be more worried about infection. They tell me to elevate but I dont get any relief when I do, do you?
 
I am going to question the wound clinic next week at my appointment about some of the things you guys do, just to bounce it off them and see what they think, or how they respond.
 
Hugs to you lyn, the leg one I have now finally got past the ankle  and I was relieved, because every movement ached like the dickens. 
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


Mackiesmama
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 10/2/2008 5:40 PM (GMT -7)   

I had 2 horrible outbreaks of PG when I was 21 ( I am 30). First one cleared up with sickning high levels of prednisone and antibiotics. The second one was a lot worse and the steroids and antibiotics did nothing...I was also on imuran. I went to a wonderful dermo and he put me on cylosporine...it was incredible...it cleared right up w/i a couple months and I was able to ween off the roids for the first time in 2 yrs..........I highly recomend asking about this drug...it saved my leg...literally.

 

good luck!


paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 10/2/2008 6:46 PM (GMT -7)   
I just was looking up cylosporine. Its so interesting since this is so, rare my primary MD certainly had no clue, the infectious disease MD had an slight idea, and the dermatologist was the best to ID it, but did not know how to treat it as never seeing it in the NY area I live in before. The only one was my GI that new right away. Who treats your PG? which doctor? My GI treated mine.  Its great to here of the other tx so if and when it haunts me again i can look at all other options. Lynn would you have access to a med such as cylosporine in Canada? OriginalAreu, let us know the results of your visit to the wound clinic.. So good to get some discussion about this.. Sending healing thoughts all your way..
29 Year old Female. Dx with Crohns 2005. Currently take Imuran 50 mg. Had 3 remicade infusions which put me in remission.
Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/3/2008 5:16 PM (GMT -7)   
YES
I was given it ( smaples( and a RX I took it too my doc he decided agaist it due to all other DD I have and meds I am on it would have caused severe interaction

The say the air helas it

Once it scabs over and strts to really pulsate with pain I will get into a shower and wet it thourly (sp) and then take
off the scab
THE only relief I have found for that feeling of
"Having a BRANDING IRON" stuck directly on spot
My stress really does bring them out as well ...........Big time

Ankle is going down in swelling but a couple of new pustules have grown beside the bigger one
OH Vey

WE shall overcome
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
               Look For The GOOD,Even At Your Lowest
 
     Listen To Your Heart,Look Inside Yourself,Understand You
 
 
 
                    

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