Pyoderma Gangrenosum update-in it for the long haul

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kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 4/13/2009 4:54 PM (GMT -7)   
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 
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
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/13/2009 6:28 PM (GMT -7)   
Hi Kimmy it was about 5 or 10 mg's before I got a bit of face deflation from the pred. and not long after getting off it. Hope you get better soon ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 4/13/2009 6:37 PM (GMT -7)   
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
Dx'd with Crohns 1984 and polycystic kidney diease in 1996
I was in remission for 16 years, Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 4/14/2009 9:51 AM (GMT -7)   
Im sorry to hear about everything you are enduring. 
Now you have me debating the pressure I am putting on my
doctors to get me going on the IV meds again.   The whole PG thing is
so frustrating ...the pain is unmanagable and its truly undescribable.
 
Hugs to you during this long, seemingly neverending, battle.
 
 
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.
 


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 4/16/2009 1:10 PM (GMT -7)   
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
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
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 4/17/2009 6:01 AM (GMT -7)   
Sorry that you're having such a hard time getting this healed up.

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/17/2009 7:21 AM (GMT -7)   
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. smilewinkgrin

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/17/2009 3:47 PM (GMT -7)   
Seriously, try using blue light on the ulcer in addition to your antibiotics. See: Science Daily

kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 4/17/2009 8:39 PM (GMT -7)   
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!!
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
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/25/2009 12:19 PM (GMT -7)   
PG can also affect you in other areas such as your arms neck and I have had them come out every where but my torso(tummy n back)

.......UC ppl also are prone to PG not just us Crohnies from what I have been told
I have documented with notes pictures ect every outbreak I have had
I almost lost my leg and a couple of fingers to this and I too would not wish it on anyone at all
The pain is very hard to describe
I kinda akin it to the feeling of a branding iron stuck right on your skin
I was told NOT to cover the sores at all and yes the suns natural rays did help me clear up alot quicker

I pray that there is less of us with this and they find something to help take some of the horrific pain away
It can consume your life along with the other DD you may have IMHO

All the best to us ..................God BLess................LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/29/2009 8:51 AM (GMT -7)   
........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
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 5/2/2009 12:15 PM (GMT -7)   

Hi everyone,

It's been a while since I posted, been going through the ringer.  I'm still on IV antibiotics everyday and on oral prednisone for the fifth time.  I'm at 80 mg once a day and am holding my breath that the fifth time I'll be able to wean down without a flare.  I've been in the hospital for bi lateral pulmonary embolisms and just got out last Tues.  They aren't sure where the PE came from, but I now have to add Coumadin therapy for 6 to 9 months on top of the PG adventure.  I can't seem to win for losing.  The PE was really scary as I'm only 40 and could have easily died if they had been bigger.  I've cashed in a whole life policy and hired a lawyer to get my divorce finalized and make out a will for my children.  Just things that a near death experience makes you think about

I saw this great DErm. and she has connections with a professor at John Hopkins that has proposed IVIG therapy and I am in the process of researching it.  I think I'm going to start a post on this site to see if anyone has any thoughts on it. 

Wishing everyone the best;

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
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, too many pain meds to list
 
Currently on-Cimzia, Cymbalta, Reglan, Pamine Forte, Methotrexate, Folic Acid, Probiotics, Phenergan, Omeperazole, and Klonopin(RLS) (IV Vancomycin, Fortaz, Solumedrol, and Lasix)

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