Dealing with Pyoderma Gangrenosum! PART II

Ouch....

My leg hurts...I am tired...I feel a bit sad:(  I did get a small nap in today and feel a bit better. Thanks Penny:)  Sadly, my leg is bleeding through the dressing and oozing Silvedene out of the wraps.  Sorry so graphic...hurts.  My yougest son broke his leg Sunday and is not a happy camper and my oldest has type 1 diabetes that has been out of control for 24 hrs.  I had to check his blood sugar all night and he was spilling ketones in large amounts until an hour ago.  Poor kids!!! Sigh:(

Mark...thanks for the reply.  When I was a kid I also had excema and recall being treated with heat and Vasoline.  It did help.  Also, I lived in Georgia before moving to Seattle.  I never had a problem untill I moved west.  My MD told me that autoimmune disease is diagnosed more here than in any other state.  Interesting and concerning.  You mentioned being in the Service.  What branch?  My husband spent almost 22yrs in the Air  Force and retired 3 yrs ago.  Just wondering ,as the military has differing ways of doing things, as you know. Also last year we went back east to Florida to visit family in April.  I was having bad outbreaks.  We went to the beach and I spent hours in the sun and water and some thing wonderful happened...the outbreaks stopped!!!!  For almost 6 months they just stopped! It was great!  I don't know if there is a connection but I did have a bit of remission.  Who knows. 

My leg looks bad, too.  But when it is not bleeding,newly scarring or open I wear shorts and smile.  These are my "war" wounds.  I try to wear them proudly.  I don't get offended when people ask about them.  When I am with my parents I always cover them  because they are so upset by them.  What do you all do about the scars?

Time to go make dinner

Peace----Willow

Redbud!! Welcome!!! Im glad you found us!!!! Im new to PG so I havent tried many meds yet, I did do Prednison for only 14 days it did well absolutely nothing to my wounds, I start Cyclosporin anyday now, still waiting on that call from my dermatologist grrrr. Im so new to PG that I have no idea how the scars from a wound even look because my wounds have been open for a year almost and I just got diagnosed in May.

Willow...Oh my goodness my friend is there anything I can do for you? I can even go to the store for you or whatever you need? You have one boy with a broken leg, one boy having issues with diabetes, you just fell and opened up a wound on your leg :( How terrible, please let me know if there is anything I can do to help you out. Maybe we should wait on our lunch until next week? I hope I dont feel like this on Friday, Im still in massive pain from just them simply cleaning my wounds yesterday. Please let me know, you have my number. You had mentioned that you dont show your parnets your scars because they get so upset over it...Wow ...my parents are the same way they are both so upset about this disease I have been blessed with....My mother has even cried over the phone, plus being over 3,000 miles away from them doesnt help either, I believe my mom wouldnt worry so much if I was at home closer to her.

I will check in with you guys later

Many Hugs,
Penny

Thanks for the welcome! It makes my heart ache to hear about your open wounds. I will be praying for all of you.

I think I replied to the main forum, but meant to write here!

I also have PG and was pleased to hear that others feel the same about how intense the pain is! Good to know I am not a wimp! I have Crohn's and 10 years ago had PG that lasted 8 months before it healed. I again have PG sores, 6 this time, on both lower legs.

I hope to learn from all of you and wish you the best.

Hi Everyone I am new here my name is sarah I am 26 yrs old and have Pg I was just diagnoesed with Antiphospholitic antibody syndrome which means my blood clotts too much which is what I believe brought on the pyderma, I am waiting to start remicade I have an ulcer that is finally going away but a New one that is twice the size which is why there are going ahead with remicade, I go to a hemotologist soon to start anticoagulants and then with that being resolved hope to never get pg again, I have been on pred since dec 08 and the fist few months no side affects and then bam gained 15 lbs and have the biggest moon face ever! I looked better 9 months preggo than I do now! Its so  hard to come to terms with it although I know it will go away and I hope to reduce once I start remicade! I am sooo sick of cleaning wounds and just dealing with it altogether, Oh and I am also on cyclosporine 400 mgs it has helped but not with getting rid of it which is why I am on to remicade! I hope that works and cant wait to look and feel normal again!

Thanks for listening I will be back on for sure!

Sarah

Mark, I kinda like Rosebud too! How is your day starting out?
Happy Grandma, welcome. I'm so sorry about your legs, and will never forget the pain. You are not a wimp! What meds are you on?
Willow, how is your family doing? Do you have people who can help out with your boys?
Talk you all later, I have to get ready for work now.
I'm a dog groomer and my first dog comes at 7:30.
Judy

Sarah! Welcome!!!! :( You remind me alot of another young person we have Emilie, she is 20 and has PG. I know what you mean about the sickness of dealing with everything that comes along with PG. I agree, I must say Im so sick of doctors and wounds growing and pain and my lovely hairy legs (wish I could take a long bath and shave!) Its def the worst thing Ive ever been through and I wouldn't even wish this upon anyone. However, Im glad you found us we will stand next to you and support you and encourage you through all this!

Im suppose to meet Willow today, however I think Im going to call her and do a rain check for next week, I still feel so so horrible, and I know she has also had a very bad week.

Redbud,
Cyclosporin is the same medication they give to people who get organ transplants. Dont ask me why this works for some people who have wounds but it does, however the side effects are just retarded. Im on 400mg to start with and I have a feeling Im probably going to be on this medication for awhile, or maybe it will be my wonder drug like Remicade is for you. That would be wonderful, I do know I agree 100% with Sarah, Im tired of this disease, I just wish it would go away :( its painful....it keeps me up almost nightly, Im sick of my legs being wrapped, I would give anything to just get the wounds to close :(

I will check in later my friends
Much love,
Penny

Thanks for the welcome!

I am on Remicade, started back in 2000, off for a short break last year. They used Protopic, but it didn't help, just made the legs sting more. Right now I have what they call a UNO BOOT, which is a zinc wrap of sorts! The pain is so much more intense since it was put on, this Wed. Not sure I will make it the week they want me to keep it on.

Remicade helped my fistulas in the past, so now hoping it helps the PG.

A BIG HELLOW to all the new members--

Penny, I hope you were able to get some rest today.  PG is challenging enough rested...impossible without sleep.  You told me about how your clinic cleans and until recently, scrapped your wounds.  It is staggering to me the amount of pain you must suffer:(  My MD no longer touches my leg, he lets me do it) I don't know what others experience.  I do my own dressing changes once a day.  I shower and let water slowly wash away debris.  I "pat" it dry with a clean towel and re-dress it with a thick coat of Silvedene, applied to the non-stick pad and wrap it with Cobane. (sorry about the spelling)  When I used to go in for dressing changes I found the wounds would not ever heal.  Granted, I keep having new outbreaks but the old ones do heal. So little consensus on what works.  We are a very unstudied population!  I look forward to lunching with you next week...or whenever we can.  You still inspire me and your upbeat positive attitude is contagious!  Thanks for the kind words and prayers!

Mark,  I agree about the care in the Military.  I was offered some of the best I ever had.  Until the last few years I never had better.  Unfortunatey, we are contracting more and more.  That means the lowest bidder gets the work. I find this most discouraging. Our service members deserve the best and now that can only be found in the big hospitals...gone are the days...keep them all in our prayers!

Redbud--

(Mark, I almost did the Rosebud thing too, thanks for doing it first!) Welcome!!!  So sorry you have to be here! I am so glad Remicade is your miacle!  You made me giggle when you said the side effects of Prednisone were "stupid":)  You are so right!  I've been on copious amounts for the last two years and gained the requite amount of weight, had the crazies,hair loss,mood stuff and sleep stuff.  I have a love/hate relationship....right now not liking it too much.  Thanks for asking about my family.  The boys are doing better, in fact I just brought the broken leg kid to church camp...hearthy lad! HA!  My older one is stable at the moment.  It is a daily struggle.  It is so hard to be 15 and not invinceable:(  My heart hurts so much for him!!!  Anyways...Welcome!!!

Sarah--  Goodness you are so young!  That also means you are strong and determined.  Hold on to that!  How old is your child?  The side effects of steroids usually go away when you come off them.  I fluctuate 20lbs off and on them.  Hate being on them too!  Welcome!  You are surrounded by the best people here! 

Happy Grandma---So ,do you have a granddaughter or grandson?!  Please don't think or even consider yourself a wimp!  This diagnoses won't allow you to be.  It is cruel,ugly and misunderstood! Noone could be considered a wimp!  We all know the pain associated with it...intimantely! I am curious about your boot.  What exactly is it?  Why are they closing the wound off?  You asked about pain meds...I don't know about others, but Percocet has worked for me.  If you have been on something for a long time it may lose efficacy.  Frequently you have to chance meds.  Best of luck!

Peace----Willow

 

Hey Mark-

What is an acticoat/profore? never heard of it.

Willow

Willow...

I actually have 12 grandchildren! Thank goodness for them, they are my day brighteners! :)

Reading comments from this post has made me feel that I am no longer a wimp, thanks everyone.

The boot was made by putting a wet Zinc wrap on my leg first, followed by another 2 wraps and when the first dried, it becomes like a light weight, thin cast. My leg is more painful than before it was apllied, so not sure I will keep it on for the week they wanted it on. The wound care nurse seems to feel keeping it covered and compresed is the way for it to heal. I have my doubts.

The only thing I took before for the pain was extra strength Tylenol, but now they added Oxycodone. Really doesn't seem to ease the pain much, but does seem to make me sleepy, so I can get some rest. I might have to ask for something else.

I appreciate your comments and caring.

Mark...

I am not all that familar with what you have had done.

From what I have read, and my past experience ten years ago with PG, along with what is being done now, it all seems like a guessing game, with no real answers.

I have to say the pain is doing me in, thought I could tolerate a lot, but man, this is the pits!!

Hope you don't get any new breakouts.

Happy Grandma-

I can understand why you are so happy!!!  My goodness you have been blessed!! Twelve grandchildren?!  How wonderful!  Do they live near you?

about your boot...can you walk on it?  Do you need crutches?  Does it pull on your wounds?  I don't get it but Mark seems to.  Does the added weight cause friction? I've never had anything like that but it would seem to me that any heavy dressing that shifted or limited movement would be more irratating to the ulcer.  Goodness knows I don't have the answers!  I have also never been to a wound clinic.  I only see my Derm for this.  Let us know how it works out:)

Penny...Again so glad you got some well deserved sleep:)  Have you ever taked Phenagan(sp) for nausea?  I can't tolerate the pain meds or Prednisone without it.  Perhaps Cyclosporine is similar for you.  When I took it I don't recall feeling sick but I was on Phenagan.  Might be worth looking into.  Did you eat before taking it?  I hope you have a better day:) It's going to be a hot one.  My tomatoes are going to be so pleased!

Peace---Willow

 Happy Grandma..what I described is very similar to an Unna boot(just probably different name).Penny what I described is like a compression dressing,usually extends from below the knee to the ankle,so one could walk with it,and wear regular socks over it,just could not wear compression stockings over it.It is a layered dressing mixed with silvadeen or zinc,it doesn't really cause friction,if you've ever had a cast for say a fracture,then you know it does tend to itch(like crazy)and you just can't get to it.If you went to a wound clinic,they would probably recommend the treatment.I did not even wear my regular compression stockings when my ulcers were bad,because like you mentioned,"the friction" on the wounds.

 I also have 11 or 12 grandchildren,they are indeed a blessing,I have 2 that I carried out of the delivery room,that is really special.