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1. • CommentAuthorKireigurl
   • CommentTimeJun 3rd 2009 edited

    # 1Report Post
   Hi Everyone,
   
   I recently signed up on the forums when I came across this site while researching PG. I don't see many posts on PG, I was just wondering if there is many people out there with this disease? If you do have this disease, how do you deal with working and controlling the pain, or can you not work while having a flare up? How long have you had this disease? Do you have another underlying disease? (most people with PG also have an underlying disease that is associated with PG, example: Crohns, IBS, UC) I just got diagnosed with PG 2 weeks ago but it took months to get it diagnosed. The pain that is linked to PG is horrible. Im currently on Fentanyl (pain patches) and Hydromorphone. Along with PG my wounds (which I have 3, 2 on my lower left leg and 1 on my lower right leg) are infected with MRSA (staph infections) so Iam also on antibiotics. I also go to a wound clinic weekly and they wrap both my legs to keep down swelling to help the healing process.
   
   Four days ago I started Prednisone(steroids) a medication known to help PG patients heal. The side effects that I have read about this medication is terrible. However, my dermatologist says that I will be short term so I shouldnt have to deal with the terrible side effects. She is going to put me on another medication after I get finished with the Prednisone, I cant remember off the top of my head what that medication was called but I will keep everyone updated once I find out.
   
   Last week I got a colonoscopy to test for Crohns and UC, the GI doctor says that from what he saw he didnt think I had either one, but would find out more with the biopsy report that he would get back this week sometime.
   
   If you have PG ...please tell me your story, let me know how the healing went, if you ever did heal, do you have flare ups often? etc. I have had my wounds since Aug 08, Im tired dealing with this disease it has been so depressing for me. I keep trying to stay positive but its hard after almost a year and not getting any results. I know I have only been told for 2 wks that I have PG and it may take time to get progress going on the healing, but its hard to stay positive when its been so long dealing with the pain :( and knowing Ive been off work for 11 weeks and I cant afford to lose my job, Im a single mother and my leave of absence runs out next Tues.
   
   
   Thanks for listening guys!
2. • CommentAuthormarkw55
   • CommentTimeJun 4th 2009

    # 2Report Post
   Hello there,
   I have also been researching all I can about PG,and came across this website/forum through WebMed.com.All I can say is WOW,maybe somewhere and someone who has an inkling of understanding about PG.First a little about me,I was first diagnosed with PG 32 years ago,while in the U.S.Army.I remember a couple of initial flareups in 1974,when ulcers appeared on my lower legs and became inflammed,in fact my legs turned red and very painful,after a couple weeks in the hospital on I.V. therapy they cleared up.Worst flare up came 2 years later while stationed in Germany,from Nov.1976 to Jan.1977 had 3 more hospitalizations for PG,that's when it was given a definite diagnosis.Had to undergo extensive I.V. therapy,whirlpoolsoaks,and daily dressings.My legs turned cherry red and very very painful,this condition for the most part ended my military service.Iv'e had Atopic Ezcema to begin with,but with flareup of PG,became much worse.Then in 2005,again had a flareup with leg ulcers,but I had just had double heart bypass surgery,and a cardiologist diagnosed me with Chronic Venous Insuffiency, that is essentially "poor circulation" in the legs,for the next 4 years,in fact until very recently had been undergoing Silvadeen cream,Hydrocolloid dressings,and sterile dressings,and finally after nearly 4 years got the ulcers mostly healed,but they were painful.The ulcers were treated as "venous stasis"ulcers.It wasn't until very recently while looking through my old service records(32 years old),that I began to make a connection as to what took so long for the ulcers to heal.
   still have a few small areas that I am watching,also on advice of my dermatologist and will be requesting a skin biopsy,as the last one I had done was about 30 years ago,but I don't remember what the report read. I just had a diabetic screening done,don't know the results of that yet. I have been disabled since 2005,mainly due to heart related conditions.I went through a wound clinc als and leg wrappings done.I have found some real good research sites,and still looking. One website is www.Ohiohealth.com..just type in Pyoderma,and another is www.pubmedcentral.nih.gov..again type in Pyoderma.
   IT is a VERY FRUSTRATING condition to deal with,I am now almost 54 years old,and for me makes it more frustrating is realize a wrong diagnosis over the past few years,that's why I will seek a skin biopsy for my own clarification. My dermatologist has me on a cream called "UREA",I put in on before going to bed at night and wrap with kerlix wrap,then take it off the next morning. This treatment at least keeps the ulcers down,I don't think it's been out too long but it sure helps.Just try to keep POSITIVE about it,and research as much as you can,the more you know about this horrible condition the better you can learn to live with it.Just GOOGLE the word Pyoderma and you'll gets lots of results.The healing process is slow,stay with the wound clinic,and follow your Dr.s instuctions.I just registered with this site/forum so I will be checking back in often.Unless someone has dealt with it,they have no idea what it's like.Glad to have found someone who knows.
   
   THANK YOU FOR LISTENING....
3. • CommentAuthorKireigurl
   • CommentTimeJun 4th 2009

    # 3Report Post
   Hi Mark..oh my goodness, thanks so much for sharing your story with me. Really I can so relate to you on so many levels. Ive been talking to a few others with PG on another forum, maybe you should register and read their stories. Because our disease is so rare and so many doctors dont even know how to treat it, I figured we could benefit from listening to one another and learn about eachothers treatments because what may not work for one of us could possibly work for another.
   
   http://www.healingwell.com/community/default.aspx?f=17&m=1490727
   
   please come register, I have found about 6 or so people on this site that has PG and we have all been talking and its been so good to just know that we are NOT alone, its nice to be able to lean on others with PG to help us through hard times.
   
   Penny
4. • CommentAuthormarkw55
   • CommentTimeJun 5th 2009

    # 4Report Post
   Hi there Penny,
   Was so good to hear from you,I will check out the forum you mentioned.I came from a large family(8 all together),and it seems I was the only one in my family that had these skin ulcers.In fact,when I was a child they were both on my arms and legs,by the time I was in my late teens they pretty much were confined to my legs.It was at a point that I would rarely wear shorts,and if I did other kids would avoid me.I have a dark complexion,as did my mother and her side of the family,I remember while in the military hospital in 1976,a doctor noted my dark complexion,and tested me for Addison's Disease,but that turned out negative (of course that was 32 years ago).
   One frustrating thing now is what I believe was a flare up that lasted about 4 years,was being treated as something else (chronic venous insuffiency-venous stasis ulcers),that from what I researched is one condition that can mimic PG.I will be talking with my PCP about ordering a skin biopsy,the last one I had was some 25 years ago,in fact I just recently found the report.Your so right Doctors don't kow how to treat the condition,as While I was undergoing treatment this time around,not once was a skin biopsy ordered.When I discoverd the diagnosis from my old service records,I called and informed my specialist at the Wound Clinic,and her response was "did you inform the Dermatologist of this?",I have since her and my dermatologist copies of my documented records.It is sooo nice to finally have some folks to relate with,I will check out that forum.I remember asking my military doctors 'what Pyoderma meant",and the response I got was "It means burning skin",and for years after that I always called it "PYRODERMA",but never could find anything on it because my spelling of the condition was off.I will be back later,going to check out that forum.
5. • CommentAuthorKireigurl
   • CommentTimeJun 5th 2009

    # 5Report Post
   Oh my gosh Mark!!! I was spelling it Pyroderma too because thats how my doctors were spelling it!! Im thinking my goodness they dont even know how to spell it correctly, no wonder they cant treat it. Wow, you have been dealing with this for so long w/out any support system, w/out talking to anyone that deals with this disease? :( Thats so horrible, Im so so glad you found this post...I would never want to go 32 yrs with Pyoderma and not have someone to talk to about it that can relate.
   
   I had the skin biopsy done, just to warn you its not fun :( You can see all about that on my posts on the other forums, my name on that forum is Kirei :) almost like here but minus the gurl part! I have a pretty small family only me and my brother...noone in my family that I know of from the past or present has had this condition, and to be honest if someone had to have it ...Im glad its me and not anyone else that I love and adore.
   
   Im 39 yrs old and I plan on being on this earth for many many years to come, I know that I cant make this disease go away, so all I can do is learn to live with it, and hope and pray that someday we can come up with something that can heal us faster..that can ease the pain we get from this disease. I seriously emailed Oprah last night about getting a foundation going to help study PG.
   
   Hope we talk soon,
   Penny
6. • CommentAuthormarkw55
   • CommentTimeJun 6th 2009

    # 6Report Post
   Hello Penny..I checked out that forum/site looked very interesting,and I have already posted my intro on the forum.Thank You for suggesting it.Yes, "PYRODERMA" is the way I remember the doctors pronounce it,it wasn't until I was looking over my service medical records,that I read the right way to pronounce it,oh well better late than never.I found an old(from 1984) skin biopsy report,that I will also provide to my PCP and dermatologist.I don't recall if the doctor at the time,explained to me or not,but I do recall I had went to him about a carbunkle(sp) on my left ankle,that may have been the early stage of another flareup(not sure),anyway I remember the doctor lanced it,and he noticed some ulcers I had and he did a skin biopsy.The area on my ankle at the time was good size ,inflammed around the edge and very painful.Anytime I've seen a doctor they also have asked about the ulcers/sores on my legs but really never asked to do a biopsy.I'm really pleased that I've found folks who are/have went through the frustration and pain of this disease.It is difficult for anyone to understand unless he/she has been through it like you,myself,and heaven only knows who else.But the discussion on the forums helps close that gap,and perhaps better awareness can come out of it.I can tell you this,there are other conditions that can mimic PG,thus wrong treatment and a delay in the healing process.Will talk to you soon again.
   Mark