Share Facebook
Crohn's Disease Forum » Treatment » IVIG Infusions for Crohns??


06-10-2013, 02:43 PM   #1
AmandaMB
 
AmandaMB's Avatar
 
Join Date: Nov 2012
Location: Cape Girardeau, Missouri

My Support Groups:
IVIG Infusions for Crohns??

My doctors are wanting to start me on IVIG, not necessarily for my Crohns, but for other issues that I have going on.
Has anyone in here tried these treatments before?
The doctors say there aren't many studies done on this for Crohns disease.
__________________
Dx: Crohn's Disease, Ulcerative Colitis
Medications previously taken:
Imuran
Remicaide
Hydrocodone
Pentasa
Methotrexate

Current Medications:

Apriso
Hycoscyamine
Vitamin D3
Prednisone
Valtrex (for chronic infections)


*Soon to be starting IVIG Infusions*
06-10-2013, 03:10 PM   #2
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
What is IVIG?
06-10-2013, 03:33 PM   #3
AmandaMB
 
AmandaMB's Avatar
 
Join Date: Nov 2012
Location: Cape Girardeau, Missouri

My Support Groups:
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:

Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
Autoimmune diseases, e.g. immune thrombocytopenia, and inflammatory diseases, e.g. Kawasaki disease.
Acute infections.

Here's a description I got offline...I'm having to figure out everything about it that way.
06-10-2013, 04:40 PM   #4
Clash
Forum Monitor
 
Clash's Avatar
It seems one of the parents in the Parents Forum has a child on IVIG, I'll tag them as they may be of some help, malgrave. It seems their child is on IVIG for a primary immune deficiency but that may also be the cause of their GI issues/Crohns, I can't remember all the details, but hopefully by tagging them they will stop by with their experience.

I did a quick search of the forum and came up with this:

http://www.crohnsforum.com/showthread.php?t=37226

You may also want to do a search on the forum using the keyword IVIG. Good luck I hope you get good results.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-11-2013, 04:35 AM   #5
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
Thanks Clash for tagging me!

Indeed, my son has been on IVIG (infusion once per month) since December and a month ago we changed to subcutaneous immunoglobulines (infusion every week).

My son has a very severe Crohn's disease and before starting IVIG he had bled almost 2 years. We tried Remicade but it made things only worse. We changed the hospital where broad immunological studies have been taken and it seems that my son may have some sort of B cell deficiency, which could be also causing his IBD (the doctors talk about Crohn like disease at the moment).

4 weeks after starting the IVIG, the bleeding stopped completely. He has been doing great and his CRP has been normal for the first time after 4 years of disease!
__________________
*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
06-11-2013, 08:47 AM   #6
AmandaMB
 
AmandaMB's Avatar
 
Join Date: Nov 2012
Location: Cape Girardeau, Missouri

My Support Groups:
Thanks for the help! Im really hoping its going to help me a lot too...I don't have many options left.
I was on the Remicadee as well, just recieved my last infusion the middle of May. We stopped it because it was making all of my other health issues worse, and I think it has stopped working for my Crohn's as well.
Im resistant to a lot of medications that they would use to treat me, so really hoping for the best!!

Glad to hear your son is doing much better! Hopefully things start looking up for him too
06-11-2013, 03:37 PM   #7
kiny
Senior Member
 
kiny's Avatar
 
Join Date: Apr 2011
Did they check B cells and total lymphocyte counts on hematology test?

I have T cell immunodeficiency, and my treatment is geared towards that, my lymphocytes absolutes should be above the 1100 / μl. Either they're in tissue or fighting toxins, or they're actually that low. My B cell counts are actually normal.
06-13-2013, 03:29 PM   #8
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
My son's B cells and lymphocyte counts have been tested on blood tests, also T cells and Nk cells. Now we are waiting for the results of the bone marrow puncture...

It seems that his B cells are low, he has hypergammaglobulinemia, see
http://www.wisegeek.com/what-is-hype...obulinemia.htm
meaning that (in his case) his immunoglobuline levels (A, E and G) are high. Yet the treatment is to give him even more IgG...
06-13-2013, 03:31 PM   #9
Malgrave
Senior Member
 
Malgrave's Avatar
 
Join Date: Jul 2012
Location: Belgium

My Support Groups:
AmandaMB, please keep us posted how the IVIG works for you. I hope it will work well for you too
09-11-2013, 07:58 PM   #10
Ebabbit
 
Join Date: Sep 2013
Location: Maryville, Tennessee
I have had three infusions of IVIG, my crohns is getting aggressive and this seems to have slowed it down. TNF blockers don't work on me anymore. I used Remicade from 1998-2003 and my doses were become more frequent to relieve symptoms so we had to deem it ineffective. Tried Cimzia too but don't think it helped at all. Before all of this I had literally tried it all- which are immune suppressors. IVIG is an immune booster. The ticket is to rest, let your body heal. The bigger issue is that insurance companies have labeled it as "investigational" and won't make it easy for you to get with out appeals. I have faith, insurance did the same thing with Remicade and Cyclosporine. Which worked to control my Crohns in the past. Having good doctors that can go to bat for you is what every patient with a "crohnic" illness needs.
I am new to this forum, but hope my experiences can find comfort in someone.
Reply

Crohn's Disease Forum » Treatment » IVIG Infusions for Crohns??
Thread Tools


All times are GMT -5. The time now is 06:17 AM.
Copyright 2006-2017 Crohnsforum.com