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Dealing with Pyoderma Gangrenosum! PART II

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Posted 7/2/2009 1:37 AM (GMT 0)
Wow....

Seriously they have been scrapping my wounds almost weekly guys for about 2 1/2 months :( No wonder my wounds are just getting worse and worse. This has just made me ball my eyes out knowing that the reason my wounds are so large and painful is from the people I trusted that would HELP ME! :( Because of the growth of my wounds and that pain that has increased with the growth I cant work :( so not only have they made me in more pain, and have made my wounds grow and grow (remember when I first started going to them my wounds were the size if a quarter and nickle, and now they are almost 6x6inches and 5x5inches) but they have also made me take more then my leave allow time from work, causing my company to be able to legally let me go. Im just sitting here crying my eyes out, knowing that the people I trusted the most to make me better has totally ruined my career! :( The likely hood of my company holding my job for me is almost slim to none!
Posted 7/2/2009 1:40 AM (GMT 0)
HI Willow!! WELCOME TO OUR LITTLE FAMILY!!!! Im so glad you have found us :)
Posted 7/2/2009 4:36 AM (GMT 0)
Penny,
Im thinking the scraping may not have helped you in healing, but when my wound increases in size , the reasoning behind it is that between the anemia, vit d deficiency, zinc being low, and the crohns not being under control all play into that. I guess I would ask them why they think they need to scrub it when the research you have done regarding the subject, its not the regular treatment. I know what its like to be mad at those who treat us. Im here to hear you vent. Do you have an alternative wound clinic you could see? Another thing that I was told would be helpful would be the hyperbaric chamber...but my insurance doesnt cover that.

Mark, you mentioned salt water....I would think it would burn? I would love to hit the beach, but I figured between the sand and the water it was a nightmare with the wound in the making. Im not even supposed to get mine wet with anything but saline. Its odd and sorta scary to me that we all get such differences in opinions on treatment of this dreaded disease.
Posted 7/2/2009 5:08 AM (GMT 0)
Thanks Original for the response, here is my logic....PG reacts to Trama to our skin, so if they are scrapping me until I bleed wouldnt that be considered trama? like MAJOR trama? Causing a reaction of my PG to flare and making my wounds grow larger? I asked one of the girls who wrap me every week if she has ever seen anyone else that has came into the wound clinic with PG...her response...No you are our first, well guess what I feel like a little rat in a lab to them, another thing I notice is I do know more about my disease than they do, they show daily that they know absolutely NOTHING about my disease, how it reacts to things, or the treatment that should be done to it. Really I should not know more about it than the people that I pay thousands of dollars to. Sadly there is no other wound clinic in my area, that I know of. I just wish they would understand my wounds are NOT their normal everyday wounds. *sigh*

The reason we all have different views and we are all getting different treatments is because NOONE KNOWS how to treat us :( This is why I desperately think that PG needs a foundation of some sort, to help with more medical studies :( I would even let them study on me, hell why not? nothing else seems to be working and if can help the next person who comes along that has PG I would love to be part of that! I dont want anyone to go through this!

I seriously think my wounds are in the state that they are due to the treatment that has been done on them, it only makes sense that they would grow and be enlarged due to trama being done to them weekly by the scrapings. As far as things being low in my blood, the only thing that is an issue in my blood work is High Liver count...and thats being tested further tomorrow with more blood tests..but everything else has been normal for me.


I had read where some lady used UV treatment and it helped her wounds tremendously, has anyone else done that? UV light treatment? I think I saw mark say he did that once too? Mark?
What about anyone else? Now the story I read it wasnt PG wounds it was ulcers from something else but the lady said in the story that the UV treatment did wonders for her wounds.

Ya know unless you have this horrible disease you really dont know what its like. The pain that comes with PG is hard to explain the only way I know how to explain it is this, It feels like I burned my leg really really bad on the oven and that someone is also stabbing me in the burn area with a sharpe object...Can anyone else explain what the pain is like for them?

I love you guys, I really truly do, its nice to know I can come here and vent everything and throw out all my feelings to people who can actually relate to them.

Love,
Penny
Posted 7/2/2009 5:36 AM (GMT 0)
Yeah!!!

Thank you thankyou thankyou!  I finally found you!  I've been floundering in cyberspace.  Finally, I connected! 

First, I've been reading about all of you and am amazed at your strength  and determination.  You all give me so much hope.  I have never talked or met anyone else with PG.  The challenges are enormous! I feel encouraged by reading your stories.  I also feel saddened by your pain.  I know it all to well.  I will post tomorrow and pray for us all tonight.  Thank you for reaching out:] 

Posted 7/2/2009 1:52 PM (GMT 0)
re:salt water, I used a TON of bathsalts (like 2 cups in a half a tub) and I think it helps a lot. Just epsom salts. I don't do well in the tub without them. I also don't let soap or anything touch it. what about you guys?
Posted 7/2/2009 2:04 PM (GMT 0)
My legs are always wrapped :( so they never get wet, they clean them at the wound clinic weekly with saline water and this pink soap that you can buy over the counter, its a liquid soap I do know that much and they mix it with saline water.


Still waiting to hear from others about scrapings? Have you ever been scraped? If so, how often? How did your wounds react to this?


Love,
Penny
Posted 7/2/2009 3:10 PM (GMT 0)

 Penny,when I was a youngster(probably 8 or 9 nine years old),I remember having the sores on my legs,was living in Barberton Ohio. now mind you this was back in the early 60's,my mother took me to a doctor and recommended a "heat lamp",I remember it had a flexible neck and she would have me lay on the floor and would place the head of the lamp close to my legs.I think the idea at the time was to dry them up with heat.As far as the salt water(ocean)it's not so much the sal***er,but the action of the waves coming into shore that I really go for cause usually afterwards taking a shower usually removes any salt residue.I had seen people sitting at waters edge in chairs or on the sand,lotta force in them liitle waves.When I was doing whirlpool therapy in the Army hospital BACK IN THE 70's,they would pour salt in the warm water while doing the agitation.I don 't really live close to the beach(last time in 2007),so it's not something I do on a regular basis. I have thought about asking my dermatologist about using a UV lamp,also have noticed when the wounds are healed they leave areas of scarring and real dark pigmentation,oh well didn't plan to enter any beauty contests in the near future.The beauty of this forum as you said Penny,everybody can relate..you are so right.I talked to a friend of mine who is also a NP,in fact went to her clinic for some recent labwork,and when I mentioned to her about the PG,her facial expression was she had never heard of it,and she has been in practice only a couple of years,but she was an RN for many years.So anyway will be back later on!!!!!!!!!!. yeah

Posted 7/2/2009 4:23 PM (GMT 0)
Hey Mark: I had what they called "bad excema" on my legs at 8 and 9 too. My dermatologist used a UV lamp. I wonder if that was what you got too? or do you think it was just heat. every winter. Used to heal it up with Jergans Lotion and Vasaline. Oh. Those were the days.

Penny: I feel for you with the wrapping, but I'm like your sad opposite. On the shoulder blade. No way to wrap. I wish. Grass is always greener on the other side of the fence, eh? :)
Posted 7/2/2009 5:11 PM (GMT 0)
I would pay big money to be able to shave my legs and take a really long relaxing bath!!! My legs are so hairy!!!!!!!!!!!!!!! EWWWWWWWWWWW!!! They look like man legs!!! hahahahaha!!! Nothing against man legs, except IM NOT A MAN!!! hehehe!

I went to my family doctor, got my blood work done waiting to hear the results to see if I can start my Cyclosporin.


I love you people!!!!! I wish we all lived closer to one another so we could go out to dinner or lunch or something!!!
Where is everyone from?

Im in the state of Washington, I probably will be moving home to Texas very soon.


Love Always,
Penny
Posted 7/2/2009 6:02 PM (GMT 0)

turn   turn   Hey janice,I can remember having these "sores" on most of my body when I was a youngster,especially on my arms and legs.I still have small white patches on my arms and some on my legs. In fact mine was just about all the time,both summer and winter,I can recall being reluctant to wear shorts or anything like that.I was the only one in my family it affected(there was 8 of us),so it was something that I inherited(lucky me).I think vaseline or some cream was put on my legs before I was put under the lamp to bake.My mother and grandmother figured I was allergic to something,even had a guinea pig once and had to give it away because they thought I was allergic to the fur(which I wasn't).By the time I was in my 20's,the areas were confined mostly to my legs,in the Army in the 70's we wore wool socks and combat boots,and winter clothing was mostly wool.I think having the close cotact wool aggravated the conditon,which was also considered "ezcema"and with a then unknown problem with my autoimmune system that should have reacted to protect,instead caused a worsening(thus the ulcers).The ezcema,PG,Thalesemmia Minor are all tied into guess what a dysfunction of the autoimmune system.Hey Penny if it will make ya feel better,I have very little hair on my legs,they have white splotches,and some scarring.

  I live in central West Virginia,about 100 miles east of Charleston,over next to Border of Virginia.

 HUGS TO ALL!!!!!!!!!!!!!!!!!

 Mark

Posted 7/2/2009 7:34 PM (GMT 0)
Hi
Thanks for the welcome! I was diagnosed with PG about two years ago. I have tried Humira,cyclosporine(has a seizure),Remicade(had an infusion reaction) and Dapsone. I am currently taking Emrel 2x week 80mg of Prednisone a day and percocet for pain. Also, I keep it wrapped and use Silvedene. So far this has worked best. I have a great and caring doctor who seems to "get it" the best anyone without PG could. He is waiting for FDA release of a new drug. I can't remember its name. Has anyone else heard of anything new on the horizon?
My heart goes out to all of you. This is an awful disorder to have. When someone asks me if it hurts I tell them it feels like constantly erupting third degree burns that start under the skin and burn from the inside out. Does anyone else experiece this feeling? I usually have at least two lesions open at a time. They will heal eventually and another one will be starting. No respite. I am concerned about a new one that seems to get larger everyday. It is about the size of an apple and hurts alot. Small amount of streaking and hot! I hope its not infected.
Thanks for letting me vent. I feel better not feeling so alone!
Posted 7/2/2009 10:21 PM (GMT 0)
MARK!!!!! HAHAHA! Yes you made me feel much better, thank you! :) *laughing*

Willow,

Yes my wounds feel like that, like I have burned them on a hot motorcycle pipe or on the stove, but I also get sharp pains shooting through mine. It sounds like you have had a rough couples of years Willow :( I start my Cyclosporine soon, I hope I get no crazy allergic reaction and I hope I dont have huge side effects(I have read them and they scare me). :( The wound you currently have open sounds large, that makes me sad for you...my wounds are not small and it seems to me the larger they get the more pain I have to deal with. You said you would get your wounds healed then more would open? Oh gosh :( I hope when mine close I never have to deal with it again!! Poor you *hugs you tight* As far as infected, your doctor should do a swab culture to make sure, the last thing you want is to get MRSA in the wound, believe me I know first hand about that and its not fun at all!! Willow, Where are your wounds located? How many do you have in total? I have 3, all of them on my legs, 2 on my left and 1 on my right, and a new 4th one that seems to be coming up close to the other 2 wounds on my left leg.

Im so glad you found us too Willow, I remember searching for days on the internet for forum posts, support groups, something that had a group of people who have this horrible disease, I found nothing...that is when I posted on this forum and another forum, the other forum is where I found Mark, he was the only person to reply to my post so glad I found him, I then brought him over here. I was happy that we all have found each other and have this forum to discuss our treatments to one another, it helps so much to know we are not alone.

Again Willow welcome to our little family, Im so happy that you found us! I guess this forum has done exactly what was hoping it would do when I had my first post looking for other PG'ers. :)


Love Always,
Penny
Posted 7/3/2009 1:34 AM (GMT 0)
Hi Penny-

Thank you so much for having the determination, will and skill to create this space for all of us PGers.  I'm sorry that you are suffering with this but am grateful to you for reaching out!  Yes, I have had a rather eventful couple of years.  I have tried lots of meds and combo of meds.  I have a love/hate relationship with most of them.  I've been on Prednisone between 125mg-80mgs a day for two years. I can't seem to taper lower without more eruptions.  There are side effects however.  Weight gain(20lbs) thinning hair, thinning bones,memory stuff,mood stuff,high blood sugar,sleep issues...just the usual steroid stuff.  I once got fed up and stopped taking it and went into adrenal failure!  Lesson learned!  I know that you are worried about the potential side effects of Cyclosporine.  Just keep in mind that they are potential side effects.  Most people will never experience them.  The benefits almost always outweight the risks.  Do you have a history that would contraindicate taking it?  I had a seizure on it but I have had seizures before as a result of a skull fracture.  Don't let my reaction scare you.  My history is not yours!  Hopefully, this will be your miracle:)

I currently have three "spots" on my left leg.  All my outbreaks have remained confined to my left lower leg and foot. Yes, my lesion do eventually clear as new ones erupt.  I frequently have overlapping sores.  These hurt more than any painkiller can numb!!  The large one that I have now is in a place that I have had four others.  The skin is so comprimised that I fear it may not heal. On a happier note, I did go for many months with no outbreaks.  It was wonderful!!! 

I am so sorry to hear that you had to suffer even more with MRSA.  That had to be terrifying! How long did it take to heal?  You must have been in so much pain:(  Gosh, that really is insult to injury.  Do you like your Doctors?  Are they hearing you?  Do you live in an area with a teaching hospital?  Frequently, there are more options there. I live in the Seattle area and feel fortunate to have great Doctors. I will keep you in my prayers...if that's okay?

Peace---Willow

Posted 7/3/2009 5:58 AM (GMT 0)
OH MY GOODNESS WILLOW!!!!!!!!!! Im in the Seattle area TOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Im in Renton!!!!!! Tell me you are close to me!!! I love 2 of my doctors the others are uneducated and dont listen well at all, I have fired a total of 3 so far. The MRSA took a month to get rid of, but the thing is, its the 2nd time Ive had MRSA in a year ...so Im in hopes that its gone forever this time!
Posted 7/3/2009 5:33 PM (GMT 0)
Hey Penny-

Want to go out for lunch next week?  I live in Redmond!!!!!!!!I can't believe it !!!I'm glad you MRSA infection cleared up.  You sure have been through alot.  I was reading you post about scraping the wounds!!  I can't imagine what that kind of pain is like!  What is the doctors logic in that? I f you scrape away healing skin how will it ever heal?  It won't heal if it is constantly retraumatized, I wouldn't think. I have had small places where the wound is infected and the skin necrotic that I pick out(I pefer to do it so I can manage the p

ain)I have never had a whole wound tore open.OUCH...sad for you:(

Lunch?!     Peace---Willow

Posted 7/3/2009 10:54 PM (GMT 0)
Hi Willow,

I would absolutely LOVE to do lunch!!! I can not believe we live so close! Wow!!!!!!! We could meet 1/2 way? Im totally new to the area, well it will be a year in Aug since Ive been in Washington. I moved here for my job. But you would think in a year I would know my way around to almost all places, but really I know how to get to my doctors, the hospital, work, grocery stores, the pharmacy, and Blockbuster!!! LOL I have only been to downtown Seattle two times, and both times I was lost and annoyed with traffic! HAHAHA!

The wound clinics logic to the scraping of the wounds is that it takes off all the dead tissues/cells that collect on the wounds, they claim that the dead tissue/cells carries bacteria and also prevents healing. I agree with you ....it does re-traumatize my wounds, I really feel this is why my wounds have grown so much. If you read my previous posts you will see how they have grown and what size they started at when I first went to the clinic and what size they are now. Its been a very frustrating road for me. I could understand if my wounds were normal wounds, but they arent....I have a disease that doesnt like trauma to happen to my skin, so it only seems to make since to me that scraping them would be considered trauma. The pain from the scraps are HORRIBLE. I hate it!!! My wounds hate to be messed with at all, and to be scrapped til they bleed, and we are talking the entire wound scrapped its a tremendous amount of pain and discomfort, after that I usually come home, and cry from pain anywhere from 4-8 hours :( sometimes longer, and I dont sleep 2-4 days after they scrap me. But like I said they will NOT be doing it anymore, I will not allow it, they think once I start cyclosporin that they are going back to scraping them, and they have another thing coming, I will NOT allow it. :)

Email me at [email protected] that way I can email you back with my number so we can chat about having lunch next week!

Many prayers for you!!!

Love,
Penny
Posted 7/4/2009 11:35 PM (GMT 0)
HAPPY 4th TO MY FAMILY ON THIS THREAD!!!!!!!!!!!!!!!!!!!!


I hope you all are painfree today so that you may enjoy the 4th of July with the people you love!!!


Warm Wishes,
Penny
Posted 7/6/2009 2:26 PM (GMT 0)
Hi everyone -  First of all, so glad Penny found a friend nearby - that is so cool!  Hopefully the two of you will be able to join forces and not only be a source of strength for each other, but perhaps be pioneers to get PG "on the map" so to speak.  I'm heading back to work tomorrow and feeling pretty good.  Wounds are looking good and pain is gone.  I did a lot of walking this week to get try to start getting my strength back.  For the first two months on leave I was in so much pain I couldn't do anything.  And on the 60 mg of Pred I was so whacky didn't want to do anything.  But now that I'm down to 30 feeling much more back to myself - except of course for the extra weight and chipmunk face (which I'll take any day over the pain).  I am waiting for the biopsy results of the strange red marks which have now appeared on my abdomen and upper and lower legs.  Not painful at all just there.  As I mentioned previously, doc said something about lupus in the skin.  So we wait.  Penny, as you know, my skin doc has said to not let wound clinic ever debride these PG wounds.  I live in Warren, Michigan is there are others nearby would love to know.  Still taking 100 mg Dapsone and down to 10 drops SSKI three times a day (plus the 30 mg Pred).  Also taking Keflex for the staph infection which I'm sure is gone but doc still wants me to continue.  Will post again when something new to report.  God bless, Miss Camper
Posted 7/7/2009 1:50 AM (GMT 0)

 It is sooooo good that Penny and Willow can get together and be support for each other.Washington State is very beautiful,travelled through there back in 1992,visited with my sister in Tacoma and then we all went down the coast into southern California.We visited Mt.Saint Helens,that is one place if one wants a true prospective of life,that is the place to see.Hope everyone had a good 4th holiday and have a great week.Will post more later... tongue

Posted 7/7/2009 7:27 PM (GMT 0)
Hi My favorite people :)

I went to the wound clinic today to get my wrappings changed and my wounds cleaned, I was really worried that the new little wound that had started last week would be a full wound this week....however good news, the spot is completely gone!!! YAY I have been blessed the last 2 weeks, other good news is blood work came back and I tested negative for Hep B and Hep C. We are waiting on 2 more labs to come back on the blood work to make sure its a go on starting my Cyclosporin. I was reading up lastnight on Cyclosporin again and I found something that just made me a little sad. Posted below:


If you are prescribed cyclosporin for your skin condition, discuss the side effects with your dermatologist. Make sure you understand what to expect, and how to deal with any problems.

Once the skin condition has stabilised on cyclosporin, your dermatologist will advise you to slowly reduce the daily dose of the medication to the minimum which controls the skin condition. Often it is necessary to stop it altogether for a few months to allow side effects to resolve. When cyclosporin is discontinued, the skin condition usually slowly reappears. It can usually be retreated with further cyclosporin or another medication.



I just thought Id share that, pretty horrible about the entire take people off the med because they need a break on the side effects and then their wounds reopen up :(

Anyways!! IM GOING to stay positive with all this :) and say I didnt have any side effects with Prednisone, so I plan on not having any side effects with this medication too!!!


Willow and I found out that we live really close to eachother as you all have seen through the posts on the forums, so we are going to meet up on Friday for lunch! Im so excited to just meet someone face to face that can relate to me, someone who understands the pain that comes with this disease, someone who understands how this disease has turned my life upside down...but also the most important part is someone that I can maybe help too, give support, or encouragement to, ya know once in awhile its good to hear someone say "Its ok you can get through this and Im here to back you up 100%" :) So Im very excited to get to know Willow :) Its going to be a pleasure to meet her!


I hope all of you are having good days!!!

I will update you on things as I go through them. OH YEAH!! Please wish me luck on my long term disability, I will find out any day now if I qualify and if I get approved for it!

Much Love and Many Hugs,
Penny!!!
Posted 7/8/2009 8:53 AM (GMT 0)
Well it seems to always be like this EVERY single Tues :( My wounds really hate going to the wound clinic they dont like to be messed with AT ALL!!! So they are giving me alot of pain tonight.....

Well I didnt start my cyclosproin just got the last 2 labs in late so I know I will be hearing back from my dermatologist tomorrow. I just want these things to close, so very sick of them being on my body. I hope all is doing well.
I will check in later on :)


Penny
Posted 7/8/2009 4:04 PM (GMT 0)
Hey to all-

I am so looking forward to lunching with Penny on Friday!  I wish we all had someone we could go out with and support.  Who knows, perhaps, we'll all meet at a convention one day!

I took a hard tumble last night...I  got into a tussle with my garden hose.  I fell on the area of my left leg that has been trying to erupt for the last two days.  I cried most of the night  it hurt so much:(  This morning the breakout came to the surface and is twice the size I thought it would be. I'm not sure if it has stopped growing yet.  OUCH CRY!  Has anyone else had something like that happen?  The fall seemed to make it worse.

Penny, you made me laugh about your "man legs"!  I know how you feel.  Maybe next time you get a dressing change you could bring a mens electric razor.  No nicks or cuts.  Just an idea.

Mark, you mentioned scarring.  How bad are yours?  I have dozens of deep dark purple ones all over my left lower leg.  My boys fondly refer to it as my zombie leg!  Their friends ask to see the oozing wounds and think it's cool. HA! I'm glad someone does.  My Derm does not think they will ever go away. What about you?

I'm going to try and nap for a bit. Have a healthy day!

Peace---Willow

Posted 7/8/2009 6:53 PM (GMT 0)

 Willow..your doctor is just about right,as far the scarring goes.The human skin is tough but can only take so much .In fact the older one gets it seems the longer it takes to heal,I have numerous areas of scarring mostly on my left leg although do have a few on the right.The sizes vary,but do have numerous white patches(hypopigmentation).I f I do dare wear shorts(not often),then I make sure my legs are well covered,my balance is as good as it used to be along with osteoarthritis in my left hip.It is good you and Penny live close enough to get together,makes for real good support.

 Will post more later!!!!!!!!! yeah

Posted 7/8/2009 9:05 PM (GMT 0)
OH NO WILLOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :( You poor thing! I was so sad to read that you took a fall and now you have a wound from it :( Gosh that is just horrible!!! I am the queen of being graceful, I dread dealing with this stuff for the rest of my life! I really do think I will wrap myself in bubble wrap! I hope you ended up getting a good nap in Willow, and Im praying that your wound has stopped growing.

GOOD IDEA about the electric razor!!! I think I will do that!

I will check in later

Much Love,
Penny
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