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Needing some moral support dealing with pyoderma gangrenosum

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Posted 3/30/2009 11:49 PM (GMT 0)
Hi fellow PGers,

     Things were going pretty good with the ulcer on my calf and I thought I was lucky to be healing better than expected.  I am not on any IV antibiotics, but still have the PICC in my arm.  I switched to the oral steroids and the progression of the ulcer seemed to have stopped.  The pain has never gone away, and is getting worse again.  The dr's have me on a slow taper off the steroids and I am now down to 20 mg and my leg is not liking it at all.  The ring of redness is coming back and the stabbing pain is worse.  The burning/branding is not bothering me, just the knife like jabs.  I asked the dr how long she thought this would continue and she said probably another 2 or 3 weeks.  Good grief even taking Lortab 10 doesn't seem to touch it, but I feel like a junkie to keep asking for more pain meds.  She gives me 30 at a time and I go through them every 7 days.  How do I know what to do or what to expect??  I'm going to work everyday because I HAVE to, I'm a single mom of 2 teen boys with no help from ex.  I should have known better than to get my hopes up that things would continue to go so well!!  I try to stay positive, but it's hard when you don't understand this PG stuff.  I guess it's all individual on how each person responds, and I've got to give it time, but I';m so tired of hurting and scared of the UGLY scar this is leaving!!  I'll call the dr tomorrow and clue her in, and Fri. is my next scheduled appt.  I was hoping to get the PICC out, but that seems like a no go now.  Thanks for letting me vent. 

kimmy cry

Posted 3/31/2009 4:47 AM (GMT 0)
hugs to you kimmy

I have yet to find a med that touches the pain I deal with daily with my PG. They at this point give me nothing.  I was told to use ice packs around it or heating pads to try and ease the pain, but that didnt do a thing either.  My wound is still wide open and the surgery was on 9/07.....the wound started in 8/07, so I know the fustration, pain and anger of it all.

I asked the dr at the wound clinic about starting my up on the IV antibiotics and steroids again to get this thing jump started again, and he wants to wait til I go see a gastro in Pittsburgh.  I personally am tired of waiting but what can ya do.

Hugs again to you and if I can offer support in any way please let me know!

 

Posted 3/31/2009 10:29 AM (GMT 0)
I personally have never had to deal with this particular problem, but I just wanted to drop a line and give you a ((((((HUG)))))) cause it sounds like you need one. I hope you heal soon.
Posted 3/31/2009 1:11 PM (GMT 0)
kimmy, try to find pain killers that work for you. don't feel for one moment like a junkie or whatever, that just adds pain to your pain!! And remember, any moment you'll start being better, so take it a morning, or afternoon or an hour at a time. I find it important in my own head to try and stay in the moment (ish!) in pain situations, and be very careful not to project forward.

and not to get too airy-fairy, but here is a thought.... when you catch yourself feeling defeated and starting to project it's going to stay that way, maybe you could stop yourself and use those moments to project a visualization of everything being healed and fine, and you feeling great. You have a lot of demands on your life and time. maybe those visualized moments could give your stress a teeny break. Things WILL be fine, and I hope it starts right after I push publish for this post.
((HUG))
Posted 3/31/2009 3:15 PM (GMT 0)

I can't imagine your  pain, but if you get any relief from the meds take them - without feeling like a junkie, does a diabetic feel like a junkie when taking insulin, of course not.

Take them when needed and hopefully some day soon you won't need them. 

Posted 3/31/2009 6:54 PM (GMT 0)
Thanks everyone for the words of encouragement, I sure needed them! I ended up having to go to dr today after the night I had last night. The swelling and cellulitis have started back and she has put me back on IV antibiotics twice a day and Solumedrol IV 125 mg twice a day again. We are starting back at 0 and going to try the taper with oral prednisone for the third time. Two steps forward four steps back is what I'm finding with this PG mess!! I'm still going to try and go to IV clinic in am and then to work, but I had to leave early today because I couldn't stand the pain. I am lucky to have understanding bosses and co-workers. I will take your comments to heart and try to not get overwhelmed with the "whens this going to end" mentality. Thanks again for your support!!

love to all,
kimmy
Posted 4/1/2009 7:34 PM (GMT 0)
I made it through another day at IV center and work. Thankful for that. I still am not getting any better, if anything the celulitis is getting worse and more pain. The burning pain is coming back as well as the stabbing pain. Has anyone else just gone backwards and not seen the steriods help like at first?? I'm so frustrated and scared!! I don't know if I need to find another dr or just stick with this one that knows my histrory so far. Any advice would be welcome. I feel lost!

kimmy
Posted 4/1/2009 11:15 PM (GMT 0)
Hello Kimmy,

I don't have PG but I just wanted to say that I hate cellulitis. Hate it hate it hate it. I nearly killed me two years ago. I had a bad cold recently and it started to back. Just can't stand it!! Levaquin took care of it.

I am praying you get relief!
Posted 4/4/2009 3:18 AM (GMT 0)
Kimmy... my heart goes out to you. I can relate to the pain, the frustration and the down in the dumps spirits.. this is a great place to get some of that support we need especially from people who relate on the same or similar levels.. You mention getting a second opinion.. from my experiences PG is very rare to doctors. It was trail and error with me to treat this as the dermatologist had never treated it before, it sounds like it is trial and error with most. Who treats you, GI doc or dermatologist? Your signature says that you were dx in March 09. I was dx in Nov and I did not heal completely until the end of March. It took 5 months, to give you an idea of how long it took. I took pictures of my leg to help me see the progress..I do have a scare and I had a really hard time at first wearing capris or shorts. When it was open I worried about it scaring all the time, but when it finally closed I was just so thankful to be done dealing with it for a while. I now call it my battle wound! I really feel like it was a battle. We are here for you through your battle to..  
Posted 4/4/2009 3:45 AM (GMT 0)
Howlyncat has severe issues with PG, I was hoping she'd be along to discuss her experiances with you...so sorry for the suffering you're going through with it.

:)
Posted 4/4/2009 5:21 AM (GMT 0)
For the cellulitis, possibly the best thing that you can try is UV light. Even blue light has some benefit. I can offer no help for the pain, but another possible aid is dressing the area with honey and covering it with a plastic bag and wrapping it with a tensor bandage overnight. This is for healing of open ulcers, but it may have some benefit for the surface layer of the skin as well. Finally, vitamin D is crucial to improving your immune system. You are almost certainly deficient (most people are and Crohn's makes it more likely). A supplement of 2000 IU of vitamin D3 is considered perfectly safe and you should add it to your regimen. None of these options would conflict with your doctor's plan and are also fairly harmless.
Posted 4/4/2009 3:46 PM (GMT 0)
Hi everyone,
Thanks for your words, ideas, and support. Yesterday was my last day at school for 9 days (spring break-yeah)!! I can now take time to rest and hopefully heal easier. I'm still going to the IV center everymorning for steroids, but no more antibiotics. The cellulitis is better and Monday we'll revisit our third try at going on oral steroids and the wean down plan. I also made an appt. with a dermatologist that my GI wants me to see. I didn't tell my inf. dr, but I just want as many inputs from people who can help as possible. I go Tues. to see her and am glad it's another female. The pain is still the worst part, but the burning is getting better. She has me using a Lidocane cream for bad episodes and then the Silvadene antibiotic cream stays on it otherwise. She has decreased my pain med to 20 Lortab 7.5 from 30 Lortab 10, because of worried about addiction. That's one of the things I am scared about, is dr's fears versus our true needs. If she quits giving me pain med, I don't know what I'll do!! This PG is so incredibly indescribable. I've lived for 16 years with Crohn's belly pain and learned to live with alot of it, and rarely use pain meds, but this PG it's not possible!! I'm down to 80 mg Solumedrol twice a day, so I am getting a little more sleep, and with spring break here hope to do some much neede catching up! Thanks again for your support.

love to all,
kimmy
Posted 4/4/2009 9:53 PM (GMT 0)

 Hugs again to you Kimmy

 I know the pain and frustration you are suffering all too well.

 I am currently being treated by a wound clinic and we are on our 5th or 6th types of

dressings on the wound.  Oddly I have always been told to keep it covered, to avoid infection and encourage new good skin growth, Lyn has usually been told to keep in uncovered. So guess it all depends on your dr and progress made.

 The first time I had PG was on the instep of my foot and it covered the whole area, that was not treated with anything, I think due in part to the dermatologist knowing so little about it. It took almost a year to completely close. 

The one I am dealing with on my leg had surgery in Sept 07,  I hope that no one else should endure the pain or issues that come with this.  Unless you have go thru it nooo one understands the pain; and as I said before there is nothing I can find to help me with the pain so at this time I have tylenol and a lot of sleepless nights.

 Keep us posted on your progress!

Posted 4/15/2009 9:47 AM (GMT 0)
Hi. I read your post regarding your condition and PG. I have had several bouts with pyoderma over the past 20 years. The only thing that has helped me with the pain associated with this is a dressing call hydrafera Blue (hope that is spelled correctly). It is a dressing to cover the affected area. The last bout I had was 3 years ago and I had to demand a perscription from the dr. The relief was immediate. If you have questions you can post them here. I will check back. I am not much with chit chat, but I really do reccomend this product. For me it was a Godsend. No pain killers worked for me and this is an old fashioned typr remedy, with no harmful drugs, but it works. If you google the name you should come up with a web site. Best wishes. Weisel
Posted 4/15/2009 1:57 PM (GMT 0)
hey weisel

I have used the hydrofera blue and had my hopes up...it worked for a bit, but not for long, they think due to the size of my wound, that it just keeps it too moist, and that damaged the good skin around the wound site. I have heard and seen sooooo many cases that it was the miracle answer.....glad it was for you.... Im still waiting for my answer LOL

Posted 4/15/2009 2:46 PM (GMT 0)
Hi. So sorry it did not work so well for you. At that time it was my pinky finger that was the afflicted area. I was told that having it develop on the hand was very rare. I did end up healing but later on had to have the finger amputated (the tendons and circulation was compromised). I have also been on the imuran, for my first bout. What about dapsone? Just throwing out some ideas. With me another improvement to my condition was direct injection of cortisone all around the ulceration. Not without pain, but it seemed to have halted the progress. I have ulcerative colitis as an underlying condition as well as having been bit by a brown recluse spider. The bite seems to have initiated the pyoderma. I am thankful to have a very loving and supportive family and a very strong faith in God. When all human things fail, I have the comfort of knowing God is with me and the things we go through helps us to help others who go through the same things.
Posted 1/6/2010 4:31 PM (GMT 0)
I am new here and want to wish you all well/ PG is really tough.
I am so frustrated with the lack of understanding of the disease.
Today is a good day so I spent time advocating for myself with my doctors.
Posted 7/23/2010 10:14 PM (GMT 0)
Hi I'm new I have had pyoderma gangrenosum for about 3 years and just yesterday found out I have mrsa. I have so many questions and worries. I also have subcorneal pustular dermatitis(sneddon Wilkinson disease) and colon problems. Which I've learned to live and deal with but with mrsa I can pass it to someone it was easier when I didn't have to worry about others getting these horrible things where now I do!
Posted 7/24/2010 1:32 AM (GMT 0)
Welcome to Healing Well, Lovemysister! I am so sorry that you are having to deal with PG and MRSA at the same time! What kind of colon problems are you having? Have you had a colonoscopy to try to determinbe the problem? We have a couple members here that deal with PG. Hopefully they will come along soon and share with you.
Posted 7/24/2010 2:52 PM (GMT 0)
Hi,

Funny thing...last night I googled "healing wounds with sugar," as I had read an article in a paper and it got my curiosity up.

I checked out several web sites with testimonials relative to sugar healing (and honey). Check it out. For some people it was a last ditch effort that worked beautifully and left no scars from their open wounds.

Hey, doesn't hurt to read about it! I was impressed. I feel bad for your pain and wish you the best of luck in getting things under control.
Posted Today 1:38 AM (GMT 0)
Hi.  I'm new to the forum and have read some of the horrendous stories people have gone through with pyoderma.  At this point, I've been having problems since May and been on prednisone since August, starting at 60 mg a day and tapering down to 15 when it started to srpead again.  I was boosted back up to 40 mg and things again improved dramatically, but now it seems to be recurring when I am tapered down to 20 mg.  While my case seems mild at this point in comparison to many others, I was wondering if anyone had the same types of issues with the prednisone losing effectiveness at lower doses?  I am also on Imuran for the Crohn's as well. 
Posted 12/11/2010 3:44 AM (GMT 0)
Underlying mild Crohns for 30 years with flares only 1-2 times every 10 years.
Hockey skate kick initiated my PG in 2000 on my left leg. Large doses 60-100 daily slowly brought it under control, but after 18 months developed cataracts and had both lenses blown out and replaced. PG reoccurs after a trauma to the leg. the last one was bad, starting in Fall 08 and now just closing over. Multiple deep sites, playing card size, needed 100 daily to achieve any results. Site injections and low doses were a joke; the large doses gave me a Barry Bonds head and face swelling. Finally started Humira 2x monthly with great success. Pain dropped from a 9-10 daily down to a 2; no mood swings, night sweats and leg cramps. Just large patchy skin peeling and itching around the affected PG healing areas.
Posted 12/13/2010 3:32 AM (GMT 0)
Hey is anyone else using manuka honey with or without steriods? I am having a positive experience would love to discuss.
Posted 12/29/2010 12:51 PM (GMT 0)
I am a previous patient of PD. I had it back in 2003 and 2004. Luckily, my doctors sent me to a teaching hospital/university and they managed to diagnose it. The first surgeon didn't understand it and ended up cutting out 5 pounds of flesh from my abdomen before he finally stepped back and sent me to the other hospital. With the huge hole in my stomach, there were many exposed nerves and dressing changes nearly killed me in pain. I remember being on 2 pain meds, the immediate release one I took before dressing changes was dilaudid. I can't remember the extended release one. But if it is possible, you may be able to try the dilaudid and see if it helps for pain control.

My doctors were a dermatology team that treated my disease correctly even though I don't think they had ever actually treated the disease before. I had IV antibiotics and then a steroid taper. It took me about 6 months to fully heal the first time. The second time, I was treated at the same hospital and the would cleared up within a few weeks.

If you feel you need a second opinion for your treatment, I would definitely recommend a teaching university hospital as they are more informed and will try alternative treatments if what you are on is not working.

Trudy
Posted 12/29/2010 3:32 PM (GMT 0)
Hi Trudy2 and welcome to Healingwell. I have started a new post for you, so that your posts get more attention. I did have to delete some of your posts as they were duplicates and duplicate posts are against forum rules. I might suggest instead of pulling up old posts you might start a new post as our members tend to ignore older posts thinking they already responded to them. Again welcome to Healingwell, we have a few members with PG on the forum. Hugs!
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