Dealing with Pyoderma Gangrenosum! PART III

 Happy grandma..when I was first diagnosed with PG some 32 years ago,I remember(Penny knows this well),the doctor I was seeing at the time would pronouce the disease as 'PYRODERMA"and I recall asking the doctor what it meant? and his response top me was "it means burning skin." So being a 20 something year old at the time that was how I would write it out when trying to look it up,but never could find anything on "PYRODERMA", now back then (70's),didin't have the leisure of just going on line and googling the topic,just relied on books.It wasn't until this past Spring (after going through wound treatments for past 2 years), that I pulled out my 32 year old service medical records,that I realized the "correct spelling of pyoderma not pyroderma.No wonder doctors don't know really how to treat it(how do you treat something if one can't spell it let alone pronounce it). Kim, best of wishes to you and your husband,I can understand when something like PG interferes with one's career,I am a Licensed Social Worker,and it among other things ended my working career,just like it ended my military service.I too hope he has better days ahead. Penny happy to hear you stood your ground about them wanting to scrape your wounds.Well folks gonna call it a night.

 (((HUGS)))

   Mark

Mark......"Pyroderma" - buring skin, really fits!! Even with all the resources we have now, PG still is so NOT understood!

Kim..... I think it was 2 or 3 years ago that I had that meeting and it was approved, (still continuing to do studies however)but they wanted to have our feedback on how they were presenting it to potential patients. Strange about taking Mike off Remicade when he got PG, because they told me it has proven to be helpful. Everything is so confusing and it is our lives and bodies that they are dealing with. 

I kind of dread seeing what my wounds will look tomorrow. The patches they put on to draw out whatever!! have so much white and black "gook" coming through.

Hope you all get a good night's sleep.

Jan

 Hello everyone..Kim that was 32 years ago when I was first diagnosed,but it wasn't until earlier this year that I realized what was going on.I would say since then I have had 3-4 reoccurences,the last one from 2007 to this year.In my research of PG I have read where there are many conditions,that mimic PG,including Chronic Venous Insuffiency(like poor ciculation to legs) that also result in stasis ulcers,but there are marked differences.Doctors who are not familiar with PG,tend to treat PG as CVI,in my case if my PCP would have referred me to a dermatologist,Internal Medicine,or Infection doctor the result might have been a better treatment plan.When I was finally referred to a dermatolgist(after treatment through a wound clinic)it was a first in over 30 years.How a treatment plan is established from the onset is crucial  and whether treatment will be long or short term.Plus the treatment has to be aggressive. I recently went to www.bing.com and found some good sites on PG.Well I shall return later.Hang in there everyone.

 (((HUGS TO ALL)))

  Mark

OH NO...Jan...I'm so sorry you are hurting so much:(  Why did they mess with your wound?  Did they think it was infected?  I don't get why wound clinics keep prolonging pain?!  All the literature dictates the contrary unless there is evidence of infection!  I'm so sorry for you.  Mark is right about the barrier issue and the associated pain.  I guess every MD has a different take.  Mine just told me to apply a thick coating of Silvedene(SP) and that would seal it off, with waterproof dressing.  It has worked pretty good for me.  My heart hurt for you.  I hope you can get some rest tonight.

Mark--I have also had some venous issues.  I have had 3 DVT's and ulcers on my other leg.  I agree there is a marked difference.  I feel fortunate that my derma knew the difference.  Sounds like you had many trying years before a proper diagnosis.  I can't imagine  what wool BDU's and combat boots would do to PG.  Had to be unbearable!  I'm so sorry about what the impact of this disease had on your career:(  Were you a LCSW in the military too?  I'm sure PG has had a positive influence on your skills as a therapist...you get pain better than most:(

Kim--It sounds like you have a soulmate in Mike. I've had PG for almost three years.  I did have a 10 month remission.  My dera told me that if once it went away, 95% of the time it would stay away.  I'm not so sure.  I feel discouraged.  If 10 months wasn't "away" I'm not sure how to define it.  What kind of writing do you do?  Ever think of chronicaling yours and Mikes' story? (spelling and typos...I'm the master...c'est la vie!)

More later

Peace---Willow

 Hello everyone..Willow I was a mechanic in the Army,worked on those big trucks(and jeeps too),I went back to school when I was in my 40s and got my degree,had to work under the supervision of a licensed social worker for 4 years before I could get licensed myself,also had to take an exam.The relation with wool clothing/combat boots,was the doctor at the time felt they aggravated my skin,in fact I remember having a profile against wearing combat boots,exposure to extreme cold and heat. Penny there was some interesting info on that website,much like google.Well shall post more later..Good day everyone.