Dealing with Pyoderma Gangrenosum! PART II

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Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 6/13/2009 1:36 PM (GMT -7)   
This is a continuation of a discussion about PG by those with it.
http://www.healingwell.com/community/default.aspx?f=17&m=1490727
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/14/2009 12:56 AM (GMT -7)   
OMG a part II!!!!!!!!!!! LOL
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 6/14/2009 4:28 PM (GMT -7)   
 
 This is soooo cool...Part 2,who would have thunked it?. Here is hoping and wishing everyone "a real good week",BTW Penny/Kirei do you have a preference of who you would like to addressed?.When you see ypor provider(s),ypu might ask them about using "Restore Hydrocolloid dressings,they are like thin wafers and you just place/press on the wound,I think they can stay on for like up to 5 days before changing.They are pretty good,just have to cover them with plasic when bathing.showering.Just a thought. Will post more later. Again Good week to all!!!!!!!!!!!!!.
 
 HUGS!!!!!!!!!!!!!!!! rolleyes

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004)


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/14/2009 7:28 PM (GMT -7)   
I was using the Restore Silver dressings, but it was not encouraging the healthy cells to grow as well. (I think it has more to do with where it was placed- it had to go across the shin bone and sort of peaked, instead of being allowed to lie flat in the wound itself.) Mine had to be changed every 2 days, and I used gauze squares on top of it to soak up the leakage, then covered with a kerliex....the Restore would stay on for the 2 days, but the squares would need changed about 3 times a day.
I am currently using Polymem with the Kerlex around it , it gets changed out about 3 times a day.
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/15/2009 10:38 AM (GMT -7)   
Mark, you can call me Penny thats fine :)

I go to my dermatologist today, in hopes she will tell me what our plan is..from what I understand the Steriods kinda fight against the antibiotics working, so I feel like we are kinda in a spot, to have PG plus MRSA is not a great combo. I will let you guys know what we come up with. Im at work right now, but currently having a very bad morning :( Having alot of pain today...thank god my job is awesome and flexable...I had one meeting this morning, and no other meetings today..this will allow me to go home and work from home after lunch time :) YAY I LOVE MY JOB!

I will let everyone know how my appointment goes today...and tomorrow I go back to the wound clinic for a re-wrap ...but its been 8 days (which I think is stupid to go that long considering I do have MRSA)....Ive noticed that my wounds are starting to leak through my dressings :(
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/15/2009 5:44 PM (GMT -7)   
Ok so I went to my dermatologist and she agrees that the infectious disease specialist was a complete moron. He says "keep her on oral antibiotics until the wounds are closed" to treat the MRSA, however the wounds will NEVER close because my dermatologist will NOT put me on steroids to treat my pg (or to close the wounds) with an infection involved. So, she is going to call him tomorrow, either he is going to allow me to go into the hospital everyday for IV treatment to kill the MRSA ...or we are going to go through my family doctor to get it done, so here is where I stand...my wounds are probably going to grow yet again because Im getting zero treatment for my PG :( and will not be getting any treatment for my PG until the MRSA is gone.

Also, my GI doctor hasnt called anyone with results and we need to know if I have an underlying disease with this, to treat the underlying disease would also treat the PG ...OMG these doctors are morons. So, I have to call him tomorrow and find out what the heck is going on...

That is where I stand as of today :( talk about being annoyed with these doctors *sigh*
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 6/16/2009 5:42 AM (GMT -7)   
 
 Penny,well you go now girl..sounds like finally you have someone going to bat for you.As one who has worked in hospitals, as well as having the treatments myself,there is no question I.V. type regimine tends to help promote quicker healing process.When I was hospitalized in Germany(long time ago),I was put on I.V. antibiotics,along with whirlpool therapy,and within 10 days the wounds had showed some improvement.Compared to my latest round (about 3 years now),on silver silvadeen alone and/or other topicals and dressings took alot lomger. But anyway at least now perhaps you are heading in the right direction,wish all the best to you.You have to be a fighter,dealing with PG issues and trying to work,that's got to be admired. Extra prayers for you!!!. yeah
 
  (((HUGS)))

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004)


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/17/2009 12:52 AM (GMT -7)   
Wow ..its 1am, Im in so much pain tonight :( I cant stay still ...and I just want it to go away..all I did was get my wound cleaned today and my dressing changed...*sigh* they didnt scrap or anything but wow...lots of pain since they messed with it.

They did a culture to see if my infection is gone..which Im sure its not, come on its MRSA..pfft ...oral antibiotics for 2 wks ..doubt its gone.

I dont think Im gonna be working tomororw if Im hurting like this, :( already missing a day because of this *sigh* bad

Pray for me :(
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian

Post Edited (Kirei) : 6/17/2009 1:56:38 AM (GMT-6)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/17/2009 5:45 AM (GMT -7)   
hey, penny - i had iv antibiotics for pre and post surgery in july and it helped my PG -- so maybe you'll see the same!
strictures, crohn's, adhesions, endo. fighting Pyoderma Gangrenosum.
Trying LDN 3.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 6/17/2009 10:54 AM (GMT -7)   
 
 Hey Janicea..how is the silver sulfadiazine working for you?. I have been looking at other web -based articles,trying to learn as much as I can about PG, I consider myself a newbie with it (even though I was actually diagnosed some 32 years ago). What took me so long is after I was discharged from the service in 1977,my service medical records went to St. Louis, and about 2 years ago I requested copies of those records,looked at them and put them away on a shelf.Starting about 2007 until this past Spring I dealt with a long reoccurrence,finally got them under control...but took some aggressive treatment through a 2nd wound clinic.It was then I got those old records down,and realized what was going on. I still use the silver,but at night put on the Urea 40% and wrap my legs then take off the dressing the next day.
  Penny hope your day is going a little better,considering the overnight pain tou've had.Continue prayers for you>>>
 

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/17/2009 1:12 PM (GMT -7)   
Hey, the silver sulfadine, in about 3 weeks, helped the PG heal up two layers. If you know what I mean. The deepest parts have recovered, and maybe it's shrunk in circumference slightly. As you said, it's slow -- but it is helping. The fastest healing I had, which reverted within a week was when I was on crohn's meds -- 5ASA -- mescalazine, but I ended up allergic to that, fell back to the bottom rung, and had to creep up again. That took 3 months though.

Overall I'm very pleased to be getting better instead of worse. 3 weeks, I'd say 25% improvement? I can deal with that. Another thing that has helped was finding a bandage with an adhesive I was not allergic to, which has kept it from getting aggravated!!

It's as harmless as you can get as a treatment, that's for sure. I'm sticking with it for now.

best,
-janice
strictures, crohn's, adhesions, endo. fighting Pyoderma Gangrenosum.
Trying LDN 3.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 6/17/2009 8:32 PM (GMT -7)   
Hi everyone,
     I'm sorry to have been away for a while.  A lot has changed with my PG and I've missed some good communication with you guys.  I got rid of my infectious disease dr after 10 weeks and have just been working with a new great derm dr.  I just went through a second round of the IVIG treatment and had my PICC line pulled after 14 weeks.  It's great totake a shower with two hands again.  The derm dr and I have been using Kenalog (steroid) injections every week around the outside of the ulcer and changed my dressing to Telfa non stick with Silverdene cream and wrapping it in coband.  Absolutely no tape allowed.  The margins of the ulcer are less purple and the inside seems to be healing upward.  I still have pain, but alot less. The oral steroids are down to 50 a day, which is wonderful from a high of 500 a day.  My blood pressure is one of the biggest worries right now and I have had to go on blood pressure medicine to try and calm it down.  I also have to stay on the blood thinner Coumadin for the Pulmonary Embolisms I got in April, and that has the effect of making the ulcer bleed after cleaning.  I've had to go to the ER a couple times after bleeding non stop for 5 hours .  I have really had to push the dr's to be aggressive.  I am already on Cimzia and Methotrexate which are also used to try and heal PG.  I am going to try and check in daily if any of you have any questions, I'm so sorry we have to deal with this horrifying part of our disease.
 
love to all,
kimmy
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade), diagnosed March '09 pyoderma gangrenosum, currently have bi-lateral pulmonary embolisms
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, Protonix, Reglan, Pamine Forte
 
Currently on-Cimzia, Cymbalta, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole,Coumadin, Calcium +Vit D, Potassium, Prednisone, Silvadene Cream, Lortab, and Klonopin(RLS)


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 6/17/2009 8:55 PM (GMT -7)   
hey Kimmy, glad you checked in. I;m so glad to hear you're going better. Healing upward! WHy the no tape? I'm interested because I can hardly tolerate any adhesive and I wonder if it makes things worse for me too. HUGS!!! Hang in there.
strictures, crohn's, adhesions, endo. fighting Pyoderma Gangrenosum.
Trying LDN 3.5mg nightly ~ because I'm allergic to pentasa and 5ASA's I'm taking Boswellia Serrata. SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/18/2009 12:52 AM (GMT -7)   
Well, I had a bad day...lots of pain still in my wounds :( I missed work today, I actually spoke with the company that does the Long Term Disability, I cant just keep missing work on my 2nd week back, Im going to end up being fired...the LTD company said for me to see my family doctor tomorrow and see if he thinks I should do another LOA ...because if the company just fires me w/out my doctor making me do a LOA ..then I get no long term disability benefits...IF he pulls me from work again, and says I cant work, it would be up to the company to terminate me or not, and if they do while Im on LOA, then I would qualify for 2500.00 a month until Im better or until Im the age of retirement. Calling him first thing in the morning, I just dont think Im able to work at this time...no matter how bad I want to, or how much it kills me to know I may lose my career that I have worked so hard to get...I cant allow myself to just be hanging with NOTHING...getting terminated w/out Disability benefits would only mean unemployment...and then for me to try and get on Social Security ...and Ive known some people that has signed up for SS and it take months just to be told no. Anyways please keep the prayers going, I know that God will lead me down the right road and take me where I need to be in my life.

Kimmy..glad you stopped in. Hows your job going? I read your story on another thread on these forums..I hope its going well for you.... And yes I agree its horrible that any of us have to deal with the pains and stress that come with PG

Much love and Many Hugs
Penny
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian

Post Edited (Kirei) : 6/18/2009 1:55:15 AM (GMT-6)


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 6/18/2009 7:21 AM (GMT -7)   
 
 Penny,I know what you are going through as far as the decison to try and hold on to something you love doing, as well as dealing with the pain and everything else that comes with PG (or any other conditions for that matter),or realizing that health issues have to be a high priority.It is really one of the toughest decisions a person could ever make.Thankfully your company has benefits in place that you can fall back on if the need should arise.As one who knows,applying for SSDI can be a frustrating experience,but most people are turned down at least twice(I was),then one has to seek the assistance of an attorney that is familiar with Social Security,then the longest wait is a turn before a judge to hear your case.That's one reason I posted little while back,about having pictures.Check out www.socialsecurity.gov,they even have a section there of conditions,can be very helpful. My prayers and best wishes are with you.
  I was looking at some web sites yesterday,and found one that provided some statistics about PG,that was kind of interesting such as "Average wound healing time was like 11.5 months,and average time for reoccurences was something like 9.5 months"(no wonder it seems like one can get a break),geting them healed,then turn around and go at it again.I'm trying to find that source again(duh never thought to write it down or at least bookmark it). Iv'e already got another small place on back of my ankle.it's a little smaller than a penny,but dark on the inside,keeping a close watch on it.
 Janicea,about the tape I have an area on my ankle that the skin is like really thin,and there is a potential of opening or causing a skin tear if tape is applied, just my thought on it. One has to be very careful when removing tape /adheshives.
 
 (((HUGS TO ALL)))

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004)


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 6/18/2009 10:45 AM (GMT -7)   
Hi fellow PG'ers,
     The reason for the no tape is to not irritate the skin around the ulcer in any way.  We are trying to keep it covered from secondary infection without the pulling or harshness from adhesive.  It seems to be doing good.  My derm dr has a professor at John  Hopkins she has been talking to about PG treatment.  He was the one who suggested the IVIG infusions that I tried 5 weeks ago.  Back then I was still seeing the infectious disease dr and 2 days after I got the infusions she scraped the ulcer and made it flare.  That was the last time I saw her!  I just went through the IVIG protocal Fri,Sat, and Sun again and things seem to be going well.  The only bad side effect is that it sucks the life out of me.  Extreme fatigue, but the dr says that's common when receiving blood products.  I am a teacher and am out of school for now, so I can rest and recover.  I also am a single mom that needs to get a part time summer job, but health comes first right now.  The biggest step for me is getting off the massive doses of steroids I've been on for 14 weeks, and it's slow going!!  They are really doing a number on my body.  My blood pressure is sky high, my teeth are falling out, my face is so swollen I look like a transplant patient, and my pancreas is having trouble controlling sugar.  It stinks that the medicine that works to control things can totally destroy other things.  The steroid injections at the ulcer site are being used to help wean down systemically the oral steroids, and I have been able to get under 60 mg a day which hasn't been possible so far.  Fingers crossed it continues.  I'll keep you guys updated on my treatments and any questions you have, feel free to ask!
 
love to all,
kimmy
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade), diagnosed March '09 pyoderma gangrenosum, currently have bi-lateral pulmonary embolisms
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, Protonix, Reglan, Pamine Forte
 
Currently on-Cimzia, Cymbalta, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole,Coumadin, Calcium +Vit D, Potassium, Prednisone, Silvadene Cream, Lortab, and Klonopin(RLS)


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/18/2009 2:24 PM (GMT -7)   
Hi All,

Well I went to my family doctor today, I had not slept for 2 days because of the pain that Im getting with my PG. The doctor has pulled me from working again, Im now putting in for Long Term Disability however whats so sad is the company gives you short term which is 12 weeks (I already used this) per year, after that you go into Long Term, and the company has every right to terminate you. Im almost sure I will be losing my job. But I have came to realize that my health is first and with out it I cant do anything in life. I go back to my doctor tomorrow. Im now on Lyrica is a medication used to help people with Shingles, Herpes, its suppose to help nerve pain..we are going to test it out to see if it helps with the pain.

Im waiting to hear back from my HR person at my company to find out what I need to do, what paperwork I would need etc to get this going. I did speak with the lady from the company that does the LOA for Long Term Disabilty yesterday, I would qualify for 2500.00 a month up to age of retirement. Which is good I suppose, if I dont get denied. Im sure I will have to apply to SSI also, and I hear thats a huge pain and most get turned down :(

Much hugs to everyone!
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian

Post Edited (Kirei) : 6/18/2009 5:59:59 PM (GMT-6)


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 6/18/2009 3:42 PM (GMT -7)   
 
 Hi there Penny,Iv'e been down that road you're facing so allow me to help a liitle.First of all if the need arises you would be applying for SSDI, not necessarily SSI. The latter is a different program through Social Security as the latter program is for folks who have little or no other income and/or have not been employed long enough to have paid into Social Security,also folks who have not worked but have medical/mental disabilities usually are approved. Another difference is once approved for SSDI, then you become eligible for Medicare health coverage,where with SSI do not,but usually the latter qualifies for Medicade health coverage.So, if your were to say stop working and draw the 2500/month from Long term disability,that would probably be over the income qualifications for SSI. Now if/when you stop working,suggest you go ahead and apply for SSDI,as there isa "5 month" initial waiting period,and yo0u can either apply on online through www.socialsecurity.gov or over the phone.Then Social security willsend you a written transcript and instructions what to do from there.Dealing with the process can be along one,but Social Security is trying to streamline the process.Most people do get turned down first couple of times,then after that a good SS attorney is a good asset,to help you through the process.There are some folks if they have solid medical documentation usually get approved in no time at all. Well Iv'e babbled long enough on that.Having been a Sociial Worker,I not only went through the process,but assisted others with it.
 Like you said your health takes high priority,not only for yourself but family as well.
 
 Remember prayers and best wishes for you. (((HUGS)))!!!!! yeah

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004)


Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/20/2009 11:33 AM (GMT -7)   
Hi All,

Just updating my friends on where Iam and whats going on with my treatment. I saw my family doctor again yesterday. This is what he has came up with ...Im going to be going into the hospital soon, Harborview, its a burn hospital..some of the best doctors in the world are there that deal with skin. My doctor thinks the treatment Im doing now is just making my wounds worse..which is true, since I first started treatment my wounds have went from a nickel size and quarter size to 5x5.3 and 4x4...the 3rd wound has also grown but I cant remember the size(all in 3 months). Im in hopes that they do some aggressive treatment to close my wounds. Im also praying that my company holds my job for me :( although they have every right to terminate me.

My parents are coming to Washington from Texas to be with me and to stay with my children while Im at the hospital. I really hope this works for me. I just hope that my wounds close quickly and that Im able to go back to doing what I love doing. I didnt expect my life to be turned upside down like this over a little cut on my leg :(


Also please pray for my daughter...she is really having a rough time with dealing with my illness. She goes to every appointment with me and she cries alot about my condition, she feels as though the doctors dont care really (and I cant blame her that is how it seems) Bless her heart, she is worried out of her mind, no matter how much I tell her not to worry..she has seen the wounds grow rapidly in the past 3 months. So please add my daughter Amber to your prayers..Thanks alot


Much love and Many hugs,
Penny
Diagnosed with Pyoderma Gangrenosum May 09


I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/21/2009 9:27 AM (GMT -7)   
Good luck to you and with the treatment process.
I would love to see you get some results.
KEep us posted when you can with how ans what they are doing.
I feel for Amber, as my kids went thru it with me and they are scared they may also end up with this stinking disease also.
 
Hugs and best of luck and progress to you!
 
 
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 6/21/2009 7:15 PM (GMT -7)   
 
 Oh Penny...Just in the short period of time,that I've been able to communicate with you and the others I can see you have been on a real roller coaster with PG. I certainly do extend extra prayers for your children,as for all the challenges kids face these days,but for them to try and understand adult issues can be overwhelming for them.You are fortunate to have your parents making the trip to be with your children,as well as the additional support system for you. Certainly wish you the very best with your upcoming treatments,and please do keep us posted with your progress,and hope you will soon be able to return to what you love to do. My kids are grown,but I have 2 granddaughtersthat when I had to go through bypass surgery several years ago,they were frightened about their papaw,as they didn't understand what was going on.
 
 MANY HUGS AND BEST WISHES FOR YOU AND YOUR FAMILY!!!!! turn turn

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004)


norma3
New Member


Date Joined Jun 2009
Total Posts : 10
   Posted 6/25/2009 12:05 PM (GMT -7)   
Hi,This is the first forum I have ever participated in. I am so glad I found others who have PG! Have felt quite alone in this nightmare, although I am very lucky to have a supremely supportive husband!

Got mine in 2005, a simple wound caused by a stick penetrating the front of my leg above the ankle. They didn't clean it well, debris left in, ulcerated & here we are.

They can't find a cause, other than the trauma from the stick & ulcer. I have Hashimoto's thyroid ( early) & breast cancer in 2007. High blood pressure & high cholesterol, under control.

Many treatments, many doctors & nothing so far works well.
This is what I do now:Rinse with saline, pat dry. I use Adaptic non-stick dressing( petroleum based guaze) or zeroform, apply thin layer of Bactricin, along with Xenaderm ointment (helps heal faster). Around the edges I apply Fluocinonide. Seems to help with the pain & slow down the spread. Then gauze on top of that, wrapped with a soft cloth or Coban, depending on how bad it is. As you know PG does not like to be irritated. I have not be on any drugs since Dec.'08, except painkillers.
You know the story, takes forever to heal up then wham! breaks out again. I wish I knew what the trigger was!
Mine just broke out again after 7 months of healing well-almost gone.
Bummersville!
I have to go have it debrided again. I have them knock me out to do it. I refuse to subject myself to severe pain anymore. Just like everybody else-poked,scraped,biopsied,burned,wet to dry, & even dry to dry. Like what's the point?, not like it won't come back. ( Gee, I think I have a little anger there :-) )

If there is too much 'gunk', I chemically debride with Santyl Collagease. Slower, but less pain. There's other stuff too, but for me this seems to work the best, leaves healthy tissue alone.

I have been lucky with infections, only one, because a doc touched me with no gloves! It won't happen again. Gloves, very important!!, when possible, I do all my own dressing changes.

I can't use polymem or Telfa /Curad non stick pads.
allergic reaction. Funny I can use that stuff on other parts of my body.

I have used the vac twice, helps a lot, .Found out u can use Adaptic or something similar to keep the sponge from adhering to your flesh. I had to have one sponge surgically removed. So next time...
I have had a skin graft. It took, as a matter of fact, it is the only skin in that area that PG hasn't attack. Odd. The other weird thing ,is that new ulcers always appear to left of old ones. Like it is making a ring around my leg.
I had hyperbaric treatment, no help. For some I heard Dapsone has worked, not me.

I was surprised to hear others have those little 'bug bites'. I just started getting them & hadn't associated them with PG. Has anybody had them turn into PG? I got them seven days before my last breakout, does anyone know what they are?

Does anybody have unexplained joint pain and/or severe fatigue? They can't figure that out either. Not cancer drugs, not thyroid, not adrenals, etc. I am beginning to think that it might be related to PG. I am also anemic, handled easily with iron & B12. ( probably from chemo)
Does anybody have Antiphospholipid/cardiolipin antibodies? Some times I test positive & sometimes neg. or borderline. They don't think that is a cause either. I take one baby aspirin a day to be safe.

The next doc I am going to see in July is a Rheumatologist. My own personal theory is that there is a SPECIFIC antibody that is attacking my skin. One that thinks my own skin is the enemy & is overly sensitive to an unknown trigger. Stop the antibody, stop the PG.

I hope some of my experiences will help someone deal with this disease a little easier!!
Norma

paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 6/25/2009 6:23 PM (GMT -7)   
Hi everyone. I posted a seperate post yesterday about a question I have about healed PG scars. Should we only post about PG in here? Thanks.

30 Year old Female. Dx with Crohns 2005. Currently take Imuran 50 mg. Had 3 remicade infusions which put me in remission.

Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.
I do believe everything happens for a reason, but I still am waiting to figure this one out :)


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 6/25/2009 8:12 PM (GMT -7)   
Glad to see your post Norma and sad that again we have a member of the group no one wants to join, PG.
Stay in Touch!
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


markw55
Regular Member


Date Joined Jun 2009
Total Posts : 48
   Posted 6/26/2009 5:51 AM (GMT -7)   
 
 Norma3..let me chime in and say welcome to our little group,however as OriginalAreU mentioned it is one noone really wants to be a part of,but it's unfortunate that some have to deal with this little known or understood disease. None the less glad you are here,perhaps through this forum we can learn from each other as to how we are dealing with PG. scool

 
  Pyoderma gangrenosum (1st Dx 1976,but just now learning about it..), Restless Leg Syndrome, Thalesemia Minor, Peripheral Neuropathy, Corononary Artery Bypass x2 (2004)

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