Pyoderma Gangrenosum update-in it for the long haul

Hi everyone,

     I haven't been on the site any lately, I just have been in this limbo with the PG that is taking over my life it seems!!  I'm still having to go to the IV clinic everyday, and am back at work today after being off for spring break.  I did get to sleep in last week a little later and go later to the clinic, so that was good.  Last I wrote my PG ulcer was flaring again and I was back to IV steroids from pill Prednisone.  I have been on 80 mg IV twice a day for 2 weeks now and it doesn't look like I"m going to be weaned anytime soon.  Last week I developed a serious case of thrush that mouth swish or pill Diflucan wouldn't touch.  It spread down my throat and they started me on Iv Diflucan for a week.  I was looking forward to not having to be infused anymore and just having to go in and get the IV steroids pushed in the PICC and get my night dose, and WHAM the dr hits me with starting on back on IV Vancomycin(antibiotic) because the ulcer is stilll open and starting to look infected.  She said with an open wound like this I can still get a secondary infection in it.  So, I'm back to an hour and a half infusion in a.m. at the clinic and same at home at night on the pump.  She cultured it today and we'll find out if anythings growing in a few days.  The pain is still the worse part, and I am trying not to get absolutely dejected by it.  I go week by week getting pain meds and trying to not take it when I can.  That is rare though because this is so incredibly painful!! I try to be positive and thankful that we've been able to stop the progression of the ulcer, we just can't go down on the steroids and heal what's already there.  

     My face is getting soooo puffed up from the roids that I literally look like a transplant patient.  I've been on many courses of steroids in the past, and was stuck on them for 2 years til last Sept.  I've never been on this high of a dose for this long (6 weeks).  Do any of you know the difference between the IV SOlumedrol and Prednisone as far as the side effects?  How long does it take this moon face to go away and at what mg did it start to go down?  Thanks for being there to vent to and I wish everyone the best health possible!

love to all,

kimmy 

I can't imagine being on that high dose of steroids on top of dealing with the pain and still working. You are a real trooper. I am sending prayers your way.

Elizabeth

Hi everyone,
The culture results came back and I now have a secondary staph infection in the PG ulcer. I will come off the Vancomycin and on Ancef (which luckily is a 30 min infusion) for the forseeable future. I guess that is what has triggered the latest flare, even with the 160 mg steroids daily. We are going down to 80 mg a.m. and 60 mg p.m. dose of steroid and going to wean really slow. Maybe the fourth time will be the charm! The pain and swelling are a little better, so that's good news. I'll keep ya'll updated, in case you can use my situation to help with yur PG. THanks for your kind words!!

love to all,'
kimmy

kimmy2 said...
Hi everyone,
The culture results came back and I now have a secondary staph infection in the PG ulcer. I will come off the Vancomycin and on Ancef (which luckily is a 30 min infusion) for the forseeable future. I guess that is what has triggered the latest flare, even with the 160 mg steroids daily. We are going down to 80 mg a.m. and 60 mg p.m. dose of steroid and going to wean really slow. Maybe the fourth time will be the charm! The pain and swelling are a little better, so that's good news. I'll keep ya'll updated, in case you can use my situation to help with yur PG. THanks for your kind words!!

love to all,'
kimmy

Hi Kimmy your having a rough time hon sorry to hear that,i don't want to sound stupid but what is PG i have never heard of it i also have crohns and get infusions but there not steriods thank god just my iron and magnisium do you have a port a cafe or a central line or do they just give you a IV each day that would suck. Your Friend Jenn.

PG is called Pyoderma Gangrenosum. It is an immune response in the skin and only about 2 % of Crohn's patients develope it. It causes deep ulcers, usually on the legs that get necrotic and are very painful. It takes months to heal with the best dr.'s and I wouldn't wish it on my worst enemy. I do have a PICC line (central cath going into the heart from my upper arm. It enables the meds to be given without sticking you every time and they can access blood draws directly from it. With the PG ulcers it's about the immune response to opertunistic wounds. It's not contagious or infectious in nature it's about calming down the immune response in the area. Steroids seem to be the drugs of choice, but it's all individual in how your body respondes. That's why it takes alot of trial and error to find the right therapy for your body. I hope you never have to deal with this evil side effect of Crohn's!! I hope you learned something you'll never have to use!!

........Kimmmy
Hi there
Just wondering how you are making out
I have had a sore on my thumb and wrist/ankle for last mth plus
I am on MTX /Folic Acid and Cephalexin............

I now have lost TOTAL hearing hearing in both ears which I have the option to settle out of court or go to court
Thing is if I settle it is not public knowledge right out there and Doc is not blamed ( kinda ) for negligence with Vanco

I have waged this war for yrs and I feel a few more wont hurt lol

Again hoping that you are making some progress
Have not heard for awhile

LYN