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pyoderma gangrenosum - anyone get a diagnosis of this??

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Posted 3/5/2009 11:29 PM (GMT 0)
Hi everyone,

Yesterday I went to my GI who I LOVE, and she suggested just to be super sure that I get a dermatologist to confirm that I have pyoderma gangrenosum, just in case it's something else.
It's an open-ish wound thats several years old.

she feels pretty confident that it IS but I can understand her wanting me to get a definitive dermatologist to weigh in....,

anyhow, today, by a stroke of luck i got in to see a dematologist, who is new to me, and she wants to go a biopsy, which will require stitches, to rule OUT everything else possible, because she says pyoderma gangrenosum is a diagnosis of exclusion.

My GI gave me the impression that it's easy to see in a biopsy, this dermatologist said you can't see it, you can only exclude everything else.

For anyone who has this, I know you know what I'm thinking.... I'm totally freaked out that anyone would put stitches into something I can barely keep healing as it is.

Anyway, long winded but here is my question: for those of you that have had a diagnosis of this, what was done to confirm it!!!!!! I'm not happy with this news, for the record I don't sweat surgeries or people doing stuff to me at all, but I just didn't vibe with this news. I'm already 50% of the way to canceling the biopsy and trying to find someone in the NY NJ area that has seen it before, this gal obviously never had.

THANK YOU TO ANYONE WITH INPUT!
-janice
Posted 3/5/2009 11:59 PM (GMT 0)
Sorry, I have never had this. But I did Google it and it appears it is a diagnosis of exclusion. A lot depends on where it is too. It seems there may be certain areas that are more often associated with IBD. Most information did state that a biopsy is important to rule our more serious causes, not really to definitively diagnose the pyoderma gangrenosum.

Personally. I think I might get a second opinion on this - mostly because of the fact that I'd be concerned about digging around in a sore that already won't heal. Perhaps, a better plan would be to treat it as such first, and biopsy it if it still does not heal in a certain amount of time. After all, you are talking about a wound that is already several years old. I highly doubt giving it a few more months with treatment for pyoderma would make a difference at this point.
Posted 3/5/2009 11:59 PM (GMT 0)
Janice, we have several people here that do have or have had pyoderma gangrenosum. From what I have read your dermatologist is correct that a biopsy is done to rule out other possible causes of the ulceration. Sometimes in late disease, it is easy to determine that it is pyoderma gangrenosum under the microscope. I'm sure that our members here with pyoderma gangrenosum will be along to share their experiences.

In a similar vein, I had a non-healing sore on my leg. A biopsy was needed to rule out cancer. Unfortunately, the derm that did the biopsy did NOT suture the area she took out and it took forever to heal. My next dermatologist was totally shocked that they had not sutured the area. I have a much uglier scar as a result.
Posted 3/6/2009 2:26 AM (GMT 0)

Hello! There are about 5 or so of us on this board with PG, so welcome! Where is the sore that you have?   The dermatologist that I seen had never seen PG in the county I live in. Its pretty rare, like 1 out 100,000 or something crazy.. like we struck the lotttey with this .. ha .. lucky us.. there is hope because I am all healed up and doing great.. Heres my tale.. (I keep in saved for easy reference)

 

I was diagnosed with Pyoderma Gangrenosum (PG) August 2007. 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 culture, 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 an 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 starting 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 that’s "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 referrals.    Unfortunately, yes you do need a biobsy to rule out anything else.. Do some research on it yourself also if you have not already..

Posted 3/6/2009 3:24 AM (GMT 0)
Wow! thanks everyone.

Mine is on my back, of all places. And it's been there in one form or another for 6-7 years. It started healing up, and then a well meaning doc shot prednisone all around it, like 12 shots, and I think it allowed an infection to start up, because it's taken almost 3 years to almost close.

I had surgery in july (adhesions and a hyst), and they gave me a bunch of antibiotics before during and after surgery, because no one knew if I was going to need a resection or not.

Out of the blue it started healing up. It's only likw about an inch round, which is down from a 3 inch round, and the open part is only about a quarter of an inch now, maybe less.

anyway, between the antibiotics for surgery, then staph in one of the incisions (thanks hospital!) and more antbiotics and antifungals and more antibiotics, and then finally the dx for crohns and going on xifaxan, it's way better, and I feel way better.

I am so not in the mood to get it tinkered with..... I'm thinking of waiting until fall now and just canning the biopsy. The dermatologist did admit that it's probably not cancer since it's improving, so what have I got to lose waiting??

Also I'm starting LDN next week, and I'm kind of curious if the healing I'm experiencing will be even more encouraged by that.

thanks so much from my heart to all of you!!!
-janice
Posted 3/6/2009 5:12 AM (GMT 0)
 I also suffer with the PG...have had an open wound on my calf going on about 18 months now.....the pain with this is immeasurable.

I did have a biopsy of mine done with the first one  I developed about 3 years ago which was on the arch of my foot.......it hurt like crazy when they did the biopsy , but they didnt do stitches, just put a wound covering on it.

I was told at that time it was a matter of elimination to get the PG diagnosis. 

If I can help you in any way, feel free to ask!!


Good Luck with things.

Posted 3/7/2009 12:25 AM (GMT 0)
Awwww, i hope yours gets better fast!! I've found, for whatever its worth, that the only thing that works for me is a bath every day (no soap or anything, just some bath salts) and occasional Muriprocin creme (a perscription antibiotic ointment, like 3x a week for a hail mary).... and I can't wear bras LOL. I have to wear t-back sports tops!!

when i was a kid I had an "excezma patch" on my leg which recurred and lasted for months. Looking back I guess it was probably the same thing, but this back one has been really hard to heal.

I'm sorry you have so much pain though! Mine is just irritated all the time.

blessings,
-janice
Posted 3/7/2009 11:32 PM (GMT 0)
I have had this for many yrs
Biopsy's DO not show anything nor does blood tests ect
PG is autoimmune and it is rare
I was constantly put on IV meds Vancomycin and there is a warnig about hearing loss or nerve damage my old doc never mentioned to me
I now am totally deaf in left ear and almost the same in right

The doc and I that I have now try keeping this under control
Stress and trauma to your body can cause ( for me ) an outbreak
I have done extensive research on this and it is very painful the ones I get as well I am full of scar tissue ...........
I am so sorry you have got this as well
There are pics here if ya google the Pics of the Pyoderma Gangrenosum sores I get
Take care and I DO wish you all the best

Keep us posted plz

LYN

There is PG and then Bullous PG

I do not get outbreaks on trunk.......only legs arms and fingers I almost lost a lower leg and finger to this DD............

Vanco is a good antibiotic when not used as it was on me ......

Posted 3/8/2009 10:43 PM (GMT 0)
Hoping you see this post

LYN
Posted 3/9/2009 4:45 AM (GMT 0)

      confused  I am in the rule out stage for PG.  I went to the emergency room Sunday with what they told me was MRSA and started me on oral Bactrim.  I had a horrible looking abcess on my calf that they lanced and packed.  Hurt so bad!!  By the next day my whole leg from knee to feet was swollen to twice the size and pink.  The abcess had a huge magenta ring about as big as a cereal bowl.  I made an appt. with an Infectious Disease dr. I had seen in the past for Wed.  When I got there they were mortified and immediately started IV Vancomycin with a pump to go home and infuse another dose that night.  The next day they added Fortaz (another antibiotic).  The next day they added Solumedrol 125 mg and Lasix 60mg.  The cultures came back no growth of any bacteria.  They did cultures for fungus, no growth yet.  While they thought it was an infection they told me to stop Methotrexate and NO Cimzia (Biologic).  On reading up on the net, Mayo Clinic has a good site on PG, I realized the immune suppressants are what I'm supposed to be on.  So I printed info and plan to take it with me to infusion in a.m.  She had mentioned PG that's why the steroids were started.  I think I'm going to push for PG treatment even before all the prelims on cultures are finished.  The abcess has necrotic borders over purple ring around it.  In the info on PG it says surgery to remove tissue can make things worse, but she was saying I would need to see a surgeon to have the necrotic areas removed.  I don't want to go in there acting like I'm the dr., but do you think I should stand up for myself?  For those of you who have PG does it come back?  For the first time in 10 years my GI Crohn's symptoms are totally symptom free.  I figured this kind of stuff would happen while the GI problems were flaring?  Anyone who has some words of advice I would greatly appreciate it!

THanks,

kimmy2

Posted 3/9/2009 2:35 PM (GMT 0)
Painted Songs.....


Just wondering if your hubby ever switched from Paxil to Lexapro? I was reading an old post of yours...

I am in the process of switching and looking for those who have been there, done that.

thanks!
Dawnie
Posted 3/9/2009 10:45 PM (GMT 0)
HI there
Sure sounds like PG to me but your doc wil find that out
It needs agressive TX IMHO
I have had the same kind of outbreaks as you have mentioned and they are very painful
I remember first time going to ER they thought it may be flesh eating Disease
You are spot on Nothing grows thats one way they conclude it is a PG

Take care
LYN

Methotrexate and antibiotics will help me out to a point but I have also to live with it

I got first sore on thumb after radical Hysterectomy

Posted 3/10/2009 3:24 AM (GMT 0)
LYN: I had a surgical menopause too, so I've got about as much estrogen as a snail. Maybe less. LOL.
Posted 3/10/2009 4:10 AM (GMT 0)
I went to the infectious disease dr. today and she said we are concluding it is PG. The steroids are doing good and the Lasix has the swelling down. The thing I'm worried about is she wants me to soak and scrub the necrotic tissue around the ulcer. In everything that I've read, you aren't supposed to debride it or have surgery because it makes it worse. I don't know what to do!!! She also said no to Methotrexate or Cimzia right now? I thought that was the course of treatment! I feel like I'm having to buck the dr. again and do what my gut says. I have the Methotrexate at home and can call the pharmacy delivery system to send the Cimzia. I have a PIC line in and am still on the Vancomycin and Fortaz with Solumedrol and Lasix, so it's not like I can just leave this dr. Any suggestions anyone???????

kimmy
Posted 3/10/2009 2:59 PM (GMT 0)
I soak in the tub and after a while I gently caress the edges, for me some of the skin on the edges was/is callous-y. Now, as it's getting closer to healing totally closed, the above makes it hurt and does not do anything, so be gentle and follow your intuition. I think the key to everything is be super gentle with it. ((HUGS))
Posted 3/10/2009 5:39 PM (GMT 0)
I had to have surgery on the one on my calf, due to all the damage it cause to the leg.   I almost lost my leg to it and they didnt expect me to probably ever walk again.  Luckily I did, but the open wound is still here.

My course of treatment is differnet than lyns...shes the first one I asked a lot of questions to when I got my diagnosis.

With the smaller one on my foot, it was recommended I soak it, but only for 15 mins max a day....the size of that one covered the whole arch of my instep.

This one started out as what I thought was a bug/ spider bite, and with in a week was so sore I could no longer stand. The damage within the 10 days was irreplacable.  The pain was excruciating, no pain killer could touch it.

After surgery, I had to use the wound vac, the size of the wound was almost 2 inches deep and went all around my calf ) all but a 1 inch piece in the back) and from ankle to almost the knee. After the wound vac proved to be useless, they came up with a course of treatment with wound dressings, etc and that is what I have continued with.  Scares me tho, because they say any infection will most likely cause me the loss of my leg.  They do not have me soak it..and they want it covered at all times.....There are no meds being given to me to help with this. They seem to hope the IMuran will help, but so far its not done a thing in my opinion.

If I can help in anyway let me know
GL

Posted 3/10/2009 10:35 PM (GMT 0)
I called my GI dr. today and made an appt. to see him and try to sort the immunosuppressants out. He thinks like I do that I should be on them. I think the infectious disease dr. is great at dealing with infections and things of that nature, but I don't think she has much experience with PG. I went ahead and took my Methotrexate, but am going to wait on Cimzia. I didn't tell inf. dr. I'm not going to try and remove any more nevrotic tissue because where I did get some off is now ulcerating like the main lesion. Is this something that is likely to keep coming back? I've never heard anyone talk about PG before? I've come across it in reading, but skimmed over it. I guess we're the lucky ones. (definate ha,ha). Thanks for your help.

kimmy
Posted 3/11/2009 1:44 AM (GMT 0)
ughh.. this whole thread just made me sad.. mainly b/c its so easy to relate to multiple tings mentioned. The flesh eating disease.. sounds so disgusting but I felt that way to.  I am not only physically scared from my ulcer but definately mentally scared from dealing with this. Its good to see everyones feedback though. Some comments: I think you need to trust your gut, do your research, involve your GI. As I mentioned I needed high prednisone doses and then Remicade.. But others as you see have used other methods. I could not do the soaking and scrubbing thing. Makes my skin crawl thinking of it b/c it was such terrible pain. I did have it lanced at one time also when they did not what it was.. Ohh.. I feel the pain for you now.. I have had one ourbreak but many others have had many. The positive thing I think is now I know that I have the PG so if and when I get another outbreak I would now know who to consult. For me my GI first and if he rec then a dermatologist. Through all of this I realized how important a GI is that you trust. Wishing healing limbs to all that needs it!

Also just to add for who asked, my hubby has not switched to Lexapro yet. He has weaned a little from Paxil but has not made the switch at this time. I think he is a little nervous about switiching and has been doing well.

Posted 3/11/2009 8:41 PM (GMT 0)
I could not do the soaking n scrubbing either
Made the sore bigger as the skin peeled away and more tissue started to basically rot

I was also told not to dress it as it makes it worse .......

I remember getting SO frustrated one time I poured a bit of bleach right on the sore
The pain was gone for a bit but my dc was not a happy camper
Nope wont do that again
Painted songs I totally agree it is great to get all this info coming up

PPL look at me like I am going to infect them I used to get angry as they teased my daughter saying I was a junkie due to the IV all the time
I saw TOP dermy's and ICDD from all over and not one helped me for so may yrs
I went w/o a DX for over 14  yrs just after I had Cait and Hystectomy

I have seen in my time here an increase in the ppl that are now finding out they have PG
Pred also helps me as does the other meds I mentioned but for ME it is to try and stay away from to much stress and trauma to body
LOL
Ya okay
I have anxiety as well
Ya cannot win.........

God Bless us all
LYN

** I totally agree educate self and others as well

YOU have to be your own best advocate for this and have a good doc that knows what is what and how to TX this

Posted 3/12/2009 3:29 AM (GMT 0)
I am having the worst night in a while. The PG looks better, and I'm still going to the iv center every day. The problem is where the necrotic skin has come off I have excrutiating pain. It feels like someone is sticking a knife in my calf!!! I hope I get to see the dr. in the morning and not the PA. I just can't catch a break with the whole Crohn's deal. I finally have my Gi tract under control and then this! Im trying to stay positive, but it gets HARD. Sorry, I just neede to vent.

Thanks,
kimmy
Posted 3/12/2009 4:04 PM (GMT 0)
Kimmy, I just wanted to check and see how you are doing today. I know yesterday was rough and hope you feel a bit better today.
Always feel free to vent here.
Posted 3/12/2009 5:03 PM (GMT 0)
the pain with PG is the worst and for me its a constant pain, no treatments or meds seem to help with it at all. Not even morphine in the hosp.
Hugs to you.....the PG club is one I dont like having new members in : (
Posted 3/12/2009 8:00 PM (GMT 0)
Thanks for the support everyone. I went to the infusion center this morning and ended up in so much pain I was sobbing in front of all the people there. Add it to my embarrasing moments list. I did get to see the dr. and she upped the solumedrol to 200mg. I definately won't be sleeping tonight! She gave me more Lortab and some Lidocane gel to put on the ulcer. It is getting so big it's scary!! I am in a better place emotinally today, so I'm thankful for that. I think the worst part of this, even more than the pain, is having my 16 year old hear me crying in the night and the look of such concern on his face. I tried to be quiet, but he woke up anyway. It just breaks my heart to have him suffer with this disease along with me. I know everyone can identify that this d doesn't just affect us, but our loved ones as well. I see my GI on Monday and will get his take on this PG thing and hopefully get to a point where I can get back to work. I desperately need to! I'm so glad to have you guys and appreciate all your support!!

love to all,
kimmy
Posted 3/12/2009 9:07 PM (GMT 0)
Kimmy.. Glad you are feeling a little better. Your deserve to cry and be sad, this sucks, no doubt about it. The pain is none I could compare anything to. I imagine its hard with your son. Best advice is to try and stay strong and find something that helps you to remain strong. Are you out of work b/c of this? I was out for about 6 weeks b/c of it. I was on a high dose of prednisone then also and having insomnia. I remember falling asleep for maybe 2 hours a night at one point. I was going insane with not working and not sleeping.. So I went to the craft store to get a hobby. I bought a jewelry making book and some beads and such. I went to town making glass bead braceletes. I then slod them at xmas time to family and friends. It helped alot, it took up my time, gave me a purpose during that time and was relaxing..Trust me I am not that crafty or artsy but they turned out amazing! Oh and the crying.. the day I had to give me doctors note to be out of work. I lost it and cried not to my boss but the big, big boss.. hahaha.. I was not emotionally stable and I knew it afterward.. Oh well.. how can we be with a huge hole in our skin that gets bigger and bigger before better.. Sending support and strength to anyone who needs it..
Posted 3/14/2009 2:51 AM (GMT 0)
I went today for my daily infusions and have to see the head dr. everyday. She keeps upping the steroids and I get less and less sleep. I guess eventually I will just fall over and have to sleep. She now has me doing 125 mg of solumedrol TWICE a day, Fortaz inf. THREE times a day, Lasix once a day , and Vancomycin once a day. I seem to spend my whole day getting ready for inf. center, driving there, waiting for next inf. time at home, and Lidocane gel in between. It really is overwhelming. The dr. said definate no t work anytime soon. She shut me down before I could even finish my sentence. I know she's looking out for me, but I am a single mom of two teen boys that pays for the insurance for us. I have to keep my job and make some money. I've used up all my sick leave trying to get my GI Crohn's under control. Thankfully I am doing well in that area. I look around the inf. center and listen to people talk, and I know there are others alot worse off than I am. I am doing some better, and look forward to seeing GI on Mon. I just really need to get some sleep! Thanks again for the support and advice!

kimmy
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