Hi Melissa. It's Butterflake again. I have been receiving 300mg of IVIG (Gammaguard) every 4 weeks for over 2 years, but you may remember that I receive it for Common Variable Immunodeficiency (CVID). Docs and I have never investigated why I no longer have enough IgG and its' subclasses, but other lupus patients also rarely develop CVID. I am also given solumedrol (can't remember the doseage) and Benedryl 50mg.
The first 6 months I received IVIG I felt awful and was pretty much bedridden. Now I look forward to getting it. The day of my infusion and the following day I don't usually feel well (it's a very large dose and hits me hard), but then any remaining or new infection I've developed during the previous 4 weeks is killed and I feel much better until the IVIG dissipates.
One week before receiving IVIG, I get Benlysta, Tylenol, and Benedryl. Sometimes I think the Benlysta helps lupus symptoms and my joints and other times I think it just makes me feel worse. Generally I don't like it, but I'm seeing a well known rheumatologist (or his PA) and they think it's my best chance to get my lupus under control.
I asked the PA why some rheumys give IVIG to lupus patients and she said it's sometimes given to "try to jumpstart" the immune back to normal. I'm sorry, but I don't really have any advice for you. I have CVID and since I've been getting the IVIG infusions I have not been admitted as a hospital inpatient. Not even during those first awful 6 months. I hope someone else reads your post who can relate to IVIG just for lupus. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry