IVIG therapy anyone heard of it

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Regular Member

Date Joined Sep 2008
Total Posts : 91
   Posted 5/2/2009 12:24 PM (GMT -7)   
I have been going through a really rough time with pyoderma gangrenosum as well as Crohn's and have been on massive doses of steroids for 8 weeks now. (as much as 375mg a day) I have a PICC line in and go to IV therapy everday also.  I have a team of dr.'s that include GI, Infectious Disease, Rheumatology, and Dermatology.  We can't seem to wean the steroids and I am also on Cimzia, Methotrexate.  Basically all the big guns you use to calm immune system down.  There's been a consult with a John Hopkin's professor who has brought up IVIG therapy.  I am in the process of educating myself on it and wondered if anyone has had any experience with it?  I'd love to hear if anyone has.  I am also dealing with bi-lateral Pulmonary Embolisms and got out of the hospital on Tues. and will be on Coumadin therapy for 6 to 9 months.  The dr''s aren't sure where or what caused them, just add them to my list of to deal withs.  I don't know if this will affect the IVIG therapy.  ANy advice is welcome.
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)

Rider Fan
Veteran Member

Date Joined May 2008
Total Posts : 1445
   Posted 5/2/2009 2:07 PM (GMT -7)   

It sounds pretty benign.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.

Go Saskatchewan Roughriders!

Regular Member

Date Joined May 2007
Total Posts : 89
   Posted 5/2/2009 9:28 PM (GMT -7)   
I have read about it and I have asked about it. 
At this point after seeing a Crohns specialist last week, they want me to get on Humira, continue with Imuran. But I have some reservations about Humira.
He also felt that a hyberbaric chamber would be a good thing to try with the PG? But currently not covered by insurance.
Keep us posted on your experiences and what goes on.
Also they suggested I do once a week iron transfusions for a month....anyone have any experience with these?
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.

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