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)