PYODERMA GANGRENOSUM

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Broadie
New Member


Date Joined Oct 2007
Total Posts : 3
   Posted 10/12/2007 11:58 AM (GMT -7)   
Hi
 
I was pointed in the direction of the anxiety forum by Kitt who tells me that your Leader Moderator is also a sufferer of PG.  I suffer from PG as part of Indeterminate / Ulcerative Colitis.
 
I suffered my first ulcer on my ankle 2 yrs ago and once finally diagnosed was treated with oral prednisolone 30 mg, 150mg azathioprine and protopic 0.3% ointment.  After weening me off the steroids I was eventually put on 8 weekly Remicade (Infliximab) infusions which have prevented new ulcers til now.
 
Most of the new ulcers appearing respond to the protopic but I have one stubborn ulcer which hasn't broken down yet but won't go away.  I am really keen to prevent this ulcer from spreading and have heard that nicotine patches could be useful in persuading ulcers to go into remission.  Has anyone had success with these or any other drug or complementary therapies.
 
Any advice welcome!
 
Emma eyes

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/12/2007 1:05 PM (GMT -7)   
Hi and Welcome.  Lyn will be here and she has great knowledge of PYODERMA GANGRENOSUM. I am glad you came this way. :)

Respectfully
Kitt
Moderator Anxiety ~ Panic Disorders
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression 
******www.healingwell.com/donate******
_____________________________________________________
"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.” 
~Rosalyn Carter

 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/13/2007 8:47 AM (GMT -7)   
HI there
I have not heard anything about the Nicotine patches helping at all
My case of PG is so severe I am to be in a Medical Journal along with my family doctor......

I had a HYSTERECTOMY ( radical) in 1992/93) this PG had laid dormant in my body til then .....

I had told my old doc I thought I had Crohns.....He told me even though I had blood in stool constand D and in pain ( severe) in LRQ all the time I did NOT present as a CD person ...LOL ......plus the PG

Well PG is DIRECTLY related to CD and has some ( 1% ) I believe connection with UC as you no doubt know....it is a very rare blood ( autoimminune disorder) that eats your skin from the inside out causing the ulcerlike sores to explode into huge sores
I have almost lost a finger and a leg to this DD........
As the time goes on ......my eruptions gets worse pain is worse and they take longer to heal

Protopic never helped me but I do hear good things about it ......From a couple of ppl on CD forum with PG........

My advice to you is this TRY to keep stress to a MINIMUM..........Any trauma to the body ( for me even Colonscopy's) cause me to erupt.......Baging my leg or arm or slicing finger accidently with a knife and being stressed out will have me broke out in sores in NO time ....EDUCATE self totally on this many many ..MOST ....doc's have NO clue what this PG is and what to do about it ......I am so lucky to have a family doc that does a TX plan with me will not let me be in pain
I can literally watch them grow

I take prednisone ........and am put on Rocephin IV when in a severe breakout ......Methotrexate and folic acid along with CD meds

If you need to talk I am here .I am battling pnuemonia still at the moment due to lack of immune system lol and house full of ppl that dont know enough not to get sick and bring it home ......HA HA ......

KEEP a sense of humor hun in all honesty please ..this is a horrid disease which I would not wish on my worst enemy ........
I am here for you ........Email me if you want I will check in the am or go to my MSN and will add you tomorrow .....

Be well
Hope I have helped.......BTW.....DO not cover the open wounds as they need the air to heal .....

Luvs
LYN

** also I have not been approved for Remicade nor Humira..we have stricter guidlines here in Ontario for that **


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  Moderator for Anxiety /Panic
  Moderator for Alzheimer's
  Co Moderator for Crohns Disease 
 
          DX with Crohns, Pyoderma Gangrenosum, Anxiety / Panic
 
      MY HW "FAMILY" GIVES ME MORE THAN THEY WILL EVER KNOW
 
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Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/16/2007 4:05 AM (GMT -7)   
Brought up for Broadie..........
    Contribute today to support Healing Well Forums...Donate @
                          http://www.healingwell.com/donate/
 
  Moderator for Anxiety /Panic
  Moderator for Alzheimer's
  Co Moderator for Crohns Disease 
 
          DX with Crohns, Pyoderma Gangrenosum, Anxiety / Panic
 
      MY HW "FAMILY" GIVES ME MORE THAN THEY WILL EVER KNOW
 
                     "Friends Are Cheaper than Therapists "
  
     
 
 
      LUVS .................LYN                            


misspinkie
New Member


Date Joined Sep 2011
Total Posts : 7
   Posted 9/5/2011 2:43 PM (GMT -7)   
To Howlyncat...Do you still have PF?...I was just diagnosed after 2 of the worse years of my life...It morphed into PG
after a misdiagnosis 2 years in my breast...No more breast but just the huge worm holes (thats what they look like to me)...How do you cope?...I cover mine with vaseline on the gauze pads....Could use your expertise, I know these posts are old...Am @ wits end...Thanks you for any info you may pass my way...

Scaredy Cat
Forum Moderator


Date Joined Sep 2006
Total Posts : 24688
   Posted 9/5/2011 8:04 PM (GMT -7)   
Misspinkie, I just wanted to respond and let you know that the two people dealing with PG have not posted here in this forum for some time now. I am sorry that I have nothing to add, as I am not knowledgable regarding this condition.

Perhaps someone will see the post, and answer, but I at least wanted you to know that the person you wanted to talk to may not respond.

If you have any other questions, or need support regarding anxiety, by all means keep posting:)

I wish you good luck and good health!
Scaredy Cat
Moderator:Anxiety/Panic

"Courage is not the abscence of fear, it is feeling afraid and doing it anyway!"

"It is when we are most lost that we sometimes find our truest friends"

Panic Syndrome recovery due to CBT

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/5/2011 9:04 PM (GMT -7)   
Hello misspinkie,
 
Welcome to HealingWell.  You may find much more info re this subject in the Crohn's Forum.  I am going to post a link to a thread for you :
 
 
Also at the top of this page in the dark blue strip there is a search feature which allows you to type in your topic and matching threads pop up.  It is a good way to use the forum for reference.
 
Kindly,
Kitt
~~Kitt~~
Moderator: GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"
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