pyoderma gangrenosum

hi all pg victims ( i say that cause my poor husband is a victim)

my husband has been diagnosed with pyoderma gangrenosum last october.....he does not suffer from any other ailments...his was caused by trauma, due to a cut recieved to his calf.

The wound has now extended to 18cm by 21 cm , bone is showing and the remaining surface is covered in necrotic tissue....

surgery is NOT a option here for  removing the necrotic tissue as this is classed as trauma ( more trauma/bigger the wound). ampitation is the last resort as there is no guarantee he wouldn't get it in the stump, as this is classed as trauma.

he like all you other sufferers is on oral steroids/ antibiotics/ and any other medication deemed to help) he even has a drip every 8 weeks of a drug called infliximab( to which he has to get funding for). this treatment has slowed the process down but it does not remove the necrotic tissue, we have tried everything from gels to dressings to remove this and surgical debridmentis not a option as again this is trauma. until this is removed the wound will not stand a chance at healing. any suggestions i can mention to his doctor.

he is on morphine tablets and has to top this up with oramorph when the pain is to much to take

please please post any suggestions or ideas . 

my husbands case is very rare so all you pg sufferers out there DO NOT PANIC this thing can be healed( we met someone) ...we just have the problem of necrotic tissue. 

Post Edited (steggy) : 8/3/2010 1:33:30 AM (GMT-6)

Hi and welcome
My PG is directly corrulated to my crohns 1 to 2 percent with cd will get pg at some time or other
i hv done extensive research on this malady n i hope to be able to help more drs understand
i would be on antibiotics iv sometimes for 2 3 mths at a time
the whole issue behind pg is the immune system or lack there of to properly heal ..from what i hv learnt thru the yrs from renowned dermys
stress always made my sores worse n they were deep..some to the bones
i have scars like you would not believe
PG does not appear on trunk of body but everywhere else...
there was pics on here ill hv a look n see if i can find them or some of my others

I have never felt pain as the pain from these sores they would literally grow right before my eyes
i now am deaf from the iv meds used for the pg
i am on a waiting list for cochlear implants to get hearing back
in the interrim i am losing my site as wel
i can only suggesst what i hv been told n that is NOT to cover the sores up
pred can help but your / his body needs to hv a healthier immune system
I TRULY AM SORRY YR HUBBY SUFFERS WITH THIS TOO
plz know i apologise for not answering more promptly but i hv been going thru some issues myself ..
i hv much more on this if you hv questions n will be around to answer
my email is there too
i feel ppl need to know more of this dd as it is starting to become more prevalent
blessings

lyn

sorry lyn

im so wrapped up in my own hubbies misery that i forgot to mention how sorry i am that you are unfortunate to suffer with this horrible condition also.

i know the pain you go through with these dreaded sores as i have to watch my may i say quite hard husband reduce to a wimp when it is at its worst.

maybe they should list pyoderma on the diseases list as there are a lot of sufferers out there (we were led to believe that there are only 1 in 100,000 people that suffer with it).

hi there
i was told that my immune system was really messed up after hysterectomy
i was also dx with cd then

the sores i had were large and weeping continually ..pus or blood
when they took swab or did a biopsy nothing grew.hmmm but my sores sure did
we hv a university hospital here and i swear i had more student docs check me out daily but i idnt mind at least i knew they were trying to learn n they asked me all kinds of questions
my biggest thing was after hysterectomy i did not heal properly
from there when i got sores they were oon fingers n arms
then went to legs
it was horrid
i was also put on mtx for long time
the reasoning the dermy gv to lv them open was to let thm hv air
many times i went and did wrap them it was horrible to look at for myself n sure others
i hope yr hubby is oing better
again my sores gt worse when under stress
blessings
lyn

hi all

thanks for the information shared....ive been all weekend checking out menuka honey....it sounds as if this thing could really work at removing the necrotic tissue and possibly do the wound good..I am going to mention it to his doc later, its only honey... so what harm can it do we have tried everything else at healing this crater. As for the pain we had a consultant phone him the other day asking could he go and see him there and then which was virtually impossible as he was in so much pain he couldnt even speak... the consultant was understanding and has offered to meet him today while at his normal hospital for dressing change/ consultation. The one thing that has helped me personally is that we are not alone with this ..its not nice for you sufferers out there but its nice for me to know we have people we can talk to that are going through this thing also. I watch my quite hard husband reduced to a quivering wimp when he gets a bad bout of pain...his everyday pain he recieves he can cope with, but these bad bouts are unbelievable and i feel helpless coz i cant do anything for him.

please keep your reply's coming

any information is helping.

and its nice to talk to someone.

janet

if i could wave my magic wand for you all.. believe me i would.

I was just going to say, they told me with having PG, a skin graft was out of the question.
Mines also on my calf, and after 3 years they have said they dont think it will ever close.
Keep us posted on things there.
Hugs.

I used the hydroffera blue in the past, it didnt do anything for my pain, and kept my wound too moist, so I had to switch to something else. I was told you have to use sterile water with it.
Glad you are having good results!!

hi all
well yesterday my husband had his iv of infliximab, it will take about 7 days before we start seeing a improvement, i also applied menuka honey on part of the wound to see if it had any affects on him like stinging etc....he says he hasnt so next dressing i will apply more.
the grand round ( lots of doctors looking at it and coming up with something) was in some ways helpful they have decided to up his dose of infliximab and its frequency..just awaiting funding again.
as for the pain hes still in agony.
janicea he is also allergic to the adhesive on the dressings so he uses a dressing called mepilex and mepitel. they dont irrated him at all and keep all the moisture in give them a go as they are large adhesive pads and you wont require wrapping as they stick. he also uses a gel called aquaform. its a tropical gel
will keep you informed about the honey

hi again

thanks for your concern, its just nice to have someone to talk to. 

i must say its also nice to know people are reading these forums and helpng each other get through tough times.

dressing change later  today 1 week after infliximab will let you know how hes getting on . the honey takes the offensive smell away i suppose thats a bonus to my hubby, sometimes he gets embarrassed with the odour especially if we have company.

walking is getting more difficult now , will need a support calaper when hes healed to aid the drop foot caused by this.

will keep you informed

janet

 

Hey Dreamstgirl,

I just wanted to welcome you to Healingwell. Glad to hear the Cimzia is working so well for your pg.

Hugs
Gail*Nanners*

My wound seems to be more moist, with the more I am up on that leg or use it more.  Like if I drive or use steps, etc.    The hydrofera worked for a few months for me then we went to Polymem Foam Pads.    My wound will be smaller at one appt, then jump back up at the next.  There seems to be no rhyme or reason.  Next Friday will be 3 years, and they dont seem to have any pretend hope that it will ever fully close.

I had another PG wound at one point on my foot, it has closed. but still re opens and thats been closed for 2 years. 

Its a frustrating disease and since its not well known about, the ways of treating it seem varied, since what works for one person, doesnt work for another.

Hugs to you & all those dealing with the wounds and the pain.

polymem non adhesive pad...we are trying something new the last few months by applying some hydrocortizone cream to the pad. After thats on, I wrap a kerlix around it to keep it in place. I dont do well with any adhesives, my skin is too thin and weak around the wound area.

No pain with removal which is a relief!

OriginalAreU said...
I was just going to say, they told me with having PG, a skin graft was out of the question.
Mines also on my calf, and after 3 years they have said they dont think it will ever close.
Keep us posted on things there.
Hugs.

Don't know why your Doc's have told you a skin graft was out of the question. I had a graft on my lower leg last September involving about 55% of my calf and it took just great. Have been having some minor lesions (two so far) but they aren't doing too bad. Hope you can have them "revisit" the graft issue and give it some serious thought. I had mine done at Vanderbilt University Medical Center in Nashville, TN