I got IVIG infusions for PG ulcer-waiting to see

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 5/11/2009 2:21 PM (GMT -7)   
Hi everyone,
     It's been a while, but I've still been dealing with Pyoderma Gangrenosum ulcer that won't give up and go away.  I've been in a sure enough fight with my body now for over 9 weeks, and you think it would give up and say uncle.  I decided to go ahead with the IVIG therapy( Intervenous Immunoglobulin).  After the Derm. dr. talked to her professor at John Hopkins and it is what he suggested the next course of action should be.  I had the infusions on Thursday (12 hrs), Friday (8 hrs), and Saturday (9 hrs).  I had to take Benadryl and Tylenol before the procedure and am still on 70 mg Prednisone.  I was finally able to get off the IV steroids 2 weeks ago and have been on 80 for a week and then 70 for a week.  Today is the next hurdle in that I go down to 60 today, which I have not been able to get past without the PG going nuts.  The pain has gotten better and now only have to use pain meds about every other day.  The progression is halted, but we can't get the ulcer or margins to give in.  I'm hopeful that the IVIG will allow my body to get past the 60 mg hump.  My face and neck are going to explode if I don't get off this high dose of steroids.  It's getting past the being subconsiousness of moon face, buffalo hump, and triple chin.  My pancreas is starting to get wonky and I am having trouble regulating my sugar.  I've had serious problems with my pancreas in the past, and can't afford to go there.  I'm off the IV antibiotics, but have to leave the PICC line in until we see how IVIG is affecting me.  I;ll let ya'll know how it does! 
 
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 5/11/2009 4:01 PM (GMT -7)   
I really hope this therapy works for you.

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 5/12/2009 6:59 AM (GMT -7)   
kimmy - keep us posted!! all the best!!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 5/12/2009 3:37 PM (GMT -7)   
Oh, kimmy -- what a long haul this has been for you. I am so sorry that the PG is being so stubborn. Keeping my fingers crossed that the IVIG works, and works quickly! I would be in the local mental hospital if I had to be on the doses of prednisone you are on...hang in there gal!
~~Ides
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.
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/12/2009 4:03 PM (GMT -7)   
I am so glad you have gotten some relief already! This sounds like aggressive treatment and you are in good hands. Hopkins is world-class!! I'm praying it just gets better and better for you ASAP!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 5/12/2009 7:16 PM (GMT -7)   
Keep us posted. If it works for you I am going to push it with my drs.
I had suggested it after reading some studies online, but they have decided to have me do some iron infusions, take Vit D and ZInc.
They are wanting me to start Humira in July becuase they think that will help with the closing of the wound. THe remicade didnt, but who knows.
almost 2 years dealing with mine; praying for you that yours will heal much more quickly
Hugs
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 5/13/2009 4:46 PM (GMT -7)   
I went to see the inf. disease dr. today and she thinks my PG is trying to develope a secondary infection, so back to the IV antibiotics. I just don't know when I'm going to get the upper hand on this thing! This means daily trips to the IV infusion center, AGAIN before I can go to work. She cultured it and we should know what bacteria this time is trying to take hold. She has deferred to the Derm. dr for the wean down on the steroids, and I don't see her until next Tues. I really like the derm dr and am glad to have her handling the roids. The plan now is to go down 5 mg a week instead of 10 mg, so at 65 mg now it will take 13 WEEKS to get off them. I don't know if my body can take another (it's already been 10 weeks-500 mg and down) 3 1/2 months of this!!! I'm trying to not get defeated about the IVIG, but I can't see that it has done very much, except make me unbelievably fatigued. She did start me back on IV Lasix also to try and help with the puffiness( nice way of saying my face and neck are about to explode). I'm done ranting for now, I'll let ya'll know how it's going. Thanks for letting me vent!


love to all,
kimmmy
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)


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 5/15/2009 12:27 PM (GMT -7)   
bump so originalareu hopefully will see. I can't see that this IVIG is helping at all. It is so expensive and I really was hoping for some dramatic results, but I'm back on IV antibiotics . I'm also trying to wean steroids and the leg is not liking it AGAIN!! I see the derm dr on TUes. and will let ya'll know what she says

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)


OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 5/15/2009 6:00 PM (GMT -7)   
Whenever I am on the IV antibiotics, I seem to get a jump in the healing. Once I am off them, within a few months my leg stops making progress and regresses again.
Did they give you any idea on how fast you may see progres with IVIG?
The last Crohns specialist I saw mentioned that he thought they hyperbaric chamber would be great for this kind of wound. But he said my insurance didnt cover it. Typical LOL
Keep your head up. I know the frustration that the stinking wound and all that goes with it brings. Anger to tears its all normal. If I can ever lead an ear feel free to contact me thru email.
Take care and thanks for the update.
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.
 


possitiveoutlook
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/17/2009 5:21 PM (GMT -7)   
Hi Kimmy,
I had a very large PG on my right lower leg start in January.
Both my inlaws were sick and I didn't go to the doctor till March.
I was in the hospital with IV meds for four days. They send me home.
Then they sent me to a dermatologist. What a waste. No one told me
anything about PG. Like stay off your feet means keep them up.
I asked to go to wound care. Got the script they wouldn't help me.
I had electrical shocks from my ankle to my knee constanctly.
Finally, I went to a holistic doctor (DOM). He did laser treatment,
oxygen therapy and electrical stimulation. I go once a week.
My let got better so I went back to work. My leg has been hanging down
and on the weekend, I stand two twelve hour shifts. Bad news is I
develped fluid pockets. But, I really got alot of relief from the DOM.
Try it.
 

Kirei
Regular Member


Date Joined Jun 2009
Total Posts : 100
   Posted 6/2/2009 1:47 AM (GMT -7)   
Kimmy I feel your pain because I too have PG, in Aug 08 I cut my leg moving and that is when the nightmare began. I have cut myself a million times in my life, it wasn't a big deal, or so I thought. The cut then led to an ulcer, then another ulcer developed very close to the first one. This has been a very very long journey for me. I had to see several doctors to even find out what I had. Iam currently juggling 4 doctors. I go to a wound clinic 2 times a week to get my legs wrapped, this keeps the swelling down on my legs to allow for faster healing, and yes I didnt mention after the 2nd ulcer a 3rd came up on my other leg. :( So both of my legs currently have wounds on them. The wound clinic noticed that the ulcers were growing and not getting any better, they did a biopsy and we went from there. I also see a dermatologist who recently started me on the steroid treatments. Today was my 3rd day taking them. I'm on Prednisone 10MG, I have read the side effects of these pills and I have to be honest, Im terrified :( I also have a GI doctor, which tested me for crohns and UC last week. He says he doesnt think I have either but that he did take some biopsys and will have the results this week sometime. I have so many symptoms of Crohns and UC I was surprised that he thinks I dont have either. The pain of PG is huge, my family doctor controls my pain well for me, seriously he has been wonderful through all this. Im on Hydromorphone and also I use a pain patch, I replace the patch every 3 days. This has really helped with the pain. Also last week the wound clinic did a culture and I have an infection in my wounds, so Im on antibiotics for that. I have a very fast paced job and hold a lot of responsibility with what I do for a living.(it is behind a desk) I have been off work for 11 wks, and I have to return back to work next week. I cant afford to quit my job, Im a single mother and need to work to survive and take care of my children. Im worried that I will not be able to deal with the pain at work because its against policy for me to be on pain pills while working. I may try to just keep the patch on and try over the counter med's to get through my days. Ive had my wounds for almost a year, I would have never thought I would get a chronic disease like this. Im 39 and HOLDING! :) I just want this nightmare to be over. I hope that your days get better soon. Thanks for listening, and if you have any advise on how to get through work days and dealing with the pain that comes with PG that would be awesome


Thanks,
Penny

crittermama
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/30/2009 7:34 PM (GMT -7)   
I've had PG since May 08'... mine is Rheumatoid Arthritis related, extremely rare and the only treatment is 4 chemo's... I'm on my 3rd chemo now- with one left to try... after that I've been told there isn't any more help... looking for information on how people deal with this disease- knowing what will happen after all treatments fail...
Peace to you all...

crittermama
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/30/2009 7:47 PM (GMT -7)   
Can someone please tell me how to subscribe to a thread...
Can't figure it out... thank you...
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 5:09 PM (GMT -7)
There are a total of 2,735,034 posts in 301,268 threads.
View Active Threads


Who's Online
This forum has 151368 registered members. Please welcome our newest member, Martinese.
378 Guest(s), 12 Registered Member(s) are currently online.  Details
Thankuall, Bololidat, Laker7491, THE HAPPY TURTLE, mikeb2308, Sarebear89, LG13, Huddie, ChickenArise, sam12, Blu's Mama, Mister Mike


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer