PYODERMA GANGRENOSA..PYODERMA GANGRENISUM...

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paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 11/2/2007 7:42 AM (GMT -7)   
hello all.. I posted about a month ago that I may have Pyoderma Gangrenosa.  I went through a denial period for the last month that this is what it is. Everything else has been ruled out at this point thought.  The dermatologist will have the remaining results on Monday.  He also took my out of work yesterday for 10-14 days as my foot was so swollen and painful after working all day.
So.. he mentioned the variety of tx for this remicade, methotrexate, prednisone, Humera.. Any comments on tx? Any certain q's I need to ask him about the treatment? I have had 3 remicade tx before and take Imuran currently.  Sorry to disappear after my last post.. I appreciate all your help & support.. thank you. Amber

Post Edited By Moderator (Howlyncat) : 6/25/2010 11:52:01 AM (GMT-6)


Sugarmarie
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Date Joined Jul 2003
Total Posts : 1205
   Posted 11/2/2007 8:09 AM (GMT -7)   
I have never had this but just wanted to send you a hug sorry about this I know it must be painful. Sending you blessings God heal you.
sm
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

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:) Sugarmarie A.K.A. Poopy Pants :)


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 11/2/2007 8:19 PM (GMT -7)   
Amber,
I hope that one of our moderators, Lyn, will see your post when she is here next. She has battled with PG for years and is likely the most up to date on treatments. I am so sorry this is happening to you.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 11/2/2007 9:52 PM (GMT -7)   
Amber Hi,

I have pyderma gangrenosa I was diagnosed with this about a year ago and I had one on my face and several on my back as well.I still have two now that is open and they can be hard to heal at time's.Lyn aslo has this and I am sure that she will be along soon and will be able to help you as well.I am on Humira and it does help.
Curley
.........
 


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 11/3/2007 4:34 AM (GMT -7)   
Amber

I had PG for yrs prior to a DX ...
I got my first sore after a hysterectomy ( radical)...apparently it laid dormant til then and it does relate to CD and in some cases UC..........

I had seen so many dermy's here in Ontario and none knew what the hades it was.....

Mine start out like pimples and will grow literally overnight and in some cases with amount of CD probs and stress in the day ...........turning into HUGE ulcerlike sores that go to the bone ......I have almost had to have a finger and lower leg amputated over this PG

I use to only get them on bones and fingers then they progressed to everywhere but the trunk of my body
I like Curley have had a couple on my face leaving horrid scars wherever I get them
They tried Protopic crme for me ..it burned.......
I am on mtx, and folic acid and although this IS not bacterial it is autoimmune I have  to have Rochephin IV 's  to help clear them up

My swabs and biopsy 's have come back all negative ........I have had quite a few ......

My old doc had me on Vancomycin IV for mths at a time and thus it caused nerve damage to ears and I now am not able to hear by over 80% in one ear and the other is getting bad too ........so I do not get the vanco any longer .......

Mine have gotten so painful that 3 x 40 mgs of oxycontin and percocets barely touch pain.........but does ease it

STRESS and TRAUMA to body will have me broke out in eruptions real quick ..........EX: I tripped up a stair at a grocery srore and landed down real hard on my one leg full force and flat footed banging arm on garbage container ......I had a sore by that night

When I first joined HW not many had heard of this BUT it seems that more are coming out with this PG and I would not wish this on my worst enemy
As Curley said they can be hard to heal ...I do not cover them as the wrap will stick due to oozing and my doc wants them left open to air .........

If I have a real bad one and it is starting to scab ( yes I know it's gross) I am told to rip off the scab (by being in hot tubby) so the sore is not as painful as it seems that it gets real bad when scabbed over and more painful as the blood is pounding thru there......they need air from my experience .....rest ,no stress ( ya okay) and make sure to have legs up so they do not get full of edema as well .....I was not able to walk for a bit a couple of yrs ago........
If you have any questions please email me

I am not on humira nor remicade waiting for approval by Canadian Gov........

There are pics of the ones I get in the Anxiety /panic forum I will see if I can bump it up for you ......if you want you can also google or go to search and pop in Pyoderma Gangrenosum......

I am really happy that you received a quicker dx with this than I did ........it was hades not knowing what the heck was going on with me ...........Same as it took forever to be properly DX with crohns

I do wish you all the best and I do hope you will never get them as bad as I have had them ...........

I have just started out with a new outbreak on old scars from banging them while cleaning and such.......

Take care and again any more questions plz feel free to email me ......... LYN

By the way I will be with my doc in a medical journal in the next few mths due to the severeity of the PG with me ..........


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Post Edited (Howlyncat) : 11/4/2007 4:53:05 AM (GMT-7)


Howlyncat
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Total Posts : 24909
   Posted 11/3/2007 5:19 AM (GMT -7)   
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Post Edited (Howlyncat) : 11/4/2007 5:11:24 AM (GMT-7)


Howlyncat
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Date Joined Jan 2005
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   Posted 11/3/2007 5:21 AM (GMT -7)   
Hoping someone can make links ...as I am not at all computer literate ........

Thanks in advance

LYN
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SoCalDad
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 11/3/2007 9:42 AM (GMT -7)   
I cut and pasted the text to browser that some nasty lookin stuff there my Mom suffered many years wth giant hive like deals on her back arms hands a week at Mayo 10 no diagnosis or treatment other than Prednisone

Years later they diagnosed it as Giant Hives

Odd a person with giant hives went undiagnosed when there is a medical condition referred to as Giant Hives..

Skin problems suck..

paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 11/3/2007 10:03 AM (GMT -7)   
Hi and Lyn & Curley thank you .. Lyn I have seen your photos.. Its hard to take in .. My leg is hard for me to look at though its just so awful looking and can be very depressing.. Curley how long have you been dealing with this for? and is it the same as Lyn that truma to the area makes you get a ulcer? Lyn, currently do yo have any open open areas? Any rec for good info sites or boks that you have come across? I go back on Monday for final results and discuss a tx plan. I am sure I will be in touch !

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/3/2007 2:35 PM (GMT -7)   
HI there
I have a Doctors Book on Skin disorders .........

Pyroderma is basically this

Pyro meaning burning of ............Derma......skin
And it from the inside out .........Autoimmune .........

As I posted any biopsy's and swabs have come back negative........

There is Bullous PG and then PG.......

YES it is very depressing and is also an embarrassment or WAS...in small town I lived in ........ppl would think theey would catch it and whisper not knowing at that time I could still hear.....

My daughter was in grade school and was told her mom was a "J" as I had the IV lock in ......
This was the what made me the most depressed ......Cait paying for my illnesses.........

STRESS is a biggie for me as well as I said above .....My family never helped with MOm ( had Alzheimer's) and passed away just over 2 yrs ago......I looked after her with open sores and IV's in it was my turn to repay her ya know and I would never had put her in a home

I am currently looking after my dad who is also going downhill from Alzheimers and a broken heart ........

Flares can also cause me to have an outbreak at times ....
With each new outbreak it is worse pain is more severe and takes longer to heal ..........
I am full of scars to the point I cannot wear shorts / or would rather not my legs look horrid .......as do my hands and arms ........

I take ativan for the PG to keep calm

What specifically did they check you for and what tests did they do ?? if you dont mind me asking ??

I will keep in touch and plz do let me know how you are making out........

I am so Bleeding sorry you too have this ...........LYN
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MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 11/3/2007 2:58 PM (GMT -7)   
Oh Lyn I am so sorry they have to hurt so bad.
big huge very gentle Hugs!
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Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 11/4/2007 4:39 AM (GMT -7)   
Thanks sis

Yes I would rather give birth NATURALLY to triplets .......than to have to deal with this .........When in outbreak I am on 3 40 mgs of Oxycontin and percocets for in between pain as well as ativan to keep blood from " boiling" so to speak and with all that at less than 100 lbs I barely get relief..........

Thanks again for being here for me always sis

((((Huggs))))
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mellisad888
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/24/2010 10:53 PM (GMT -7)   
so i was just diagnosed and am having what i think to be good result from the silver steroid cream they gave me is there any positive feedback from this disease

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/25/2010 9:25 AM (GMT -7)   
  I also suffer from PG,  I have a wound that covers almost my entire calf , from knee to ankle.
 I have had it since 2007.   I have also been told there is a good chance it may never heal. I have had surgery, the wound vac and many treatments to it.
 
 Different from Lyn tho, I am being told to keep it covered with the dressings they prescribe and to never let it scab.  Debriding it is something that should never  be done.  The pain from these is not even describable.  Nothing has touched the pain I have so I do without pain meds.  
 
 If I can help with anything, please feel free to ask.  Its something a lot of drs, etc have no idea what its all about, its those of us who deal with it that know best I have learned  LOL 
 
Hugs to you ...it sucks to have.
 
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 150 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 6/25/2010 10:50 AM (GMT -7)   
I am now 100 percent deaf from iv vancomycin used for this ..
i do hv a lawsuit pending but no amount of money can replace my hearing imho

i did try the silver wraps
for me it didnt work

imho we need dermys/ docs that only specialize in the pg
it is different tx from diff docs and honestly most docs are at a loss what to do
or how to dx as nothing grows
i really really am so sorry you are hving to deal with this as well
anymore questions email me or post here
more n more with cd and uc are getting this
huggs
lyn
                 Co Mod for... CROHNS..ANXIETY/ PANIC.....ALZHEIMERS
        DX.. a/p ....crohns ...fibro... pyoderma gangrenosum..seizures....deaf
            meds..lyrica..pentasa...valproic acid..ativan...diazepam....t 3 s prn
                  Help HEALING WELL...DONATE...www.HealingWell.com
                        WE CAN N WILL GET THRU THIS TOGETHER
                                                   LYN                       


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 6/26/2010 10:49 AM (GMT -7)   
bumping for paintedsongs
                 Co Mod for... CROHNS..ANXIETY/ PANIC.....ALZHEIMERS
        DX.. a/p ....crohns ...fibro... pyoderma gangrenosum..seizures....deaf
            meds..lyrica..pentasa...valproic acid..ativan...diazepam....t 3 s prn
                  Help HEALING WELL...DONATE...www.HealingWell.com
                        WE CAN N WILL GET THRU THIS TOGETHER
                                                   LYN                       


Pandy21
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/8/2011 12:53 AM (GMT -7)   
paintedsongs said...
Hi and Lyn & Curley thank you .. Lyn I have seen your photos.. Its hard to take in .. My leg is hard for me to look at though its just so awful looking and can be very depressing.. Curley how long have you been dealing with this for? and is it the same as Lyn that truma to the area makes you get a ulcer? Lyn, currently do yo have any open open areas? Any rec for good info sites or boks that you have come across? I go back on Monday for final results and discuss a tx plan. I am sure I will be in touch !



I am so glad reading this thread & finding someone as new as me to this problem & needing to talk to others that have been down the same road, thank you. And like your post any info would be most appreciated over here as well. I got my first sore about 3 or 4 yrs ago, they always occur on my legs, but just recently came across this site & see that people are actually talking about PG
Medication: Humira - weekly, hydrocodone, zoloft

Conditions: Crohns, Arthritis, Psoriasis, Pyroderma Gangreosum

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/8/2011 8:06 AM (GMT -7)   
Hi Pandy21 welcome to Healingwell. This is a nearly 4 year old post and most of these people are no longer even posting on the forum. I might suggest you start a new post so that you get more current responses. We do have a few members with PG. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
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