Wow! Thank you so much for your kindness in sharing this awesome information! I see I need to update my status, as I am unfortunately no longer taking Benlysta infusions due to what was a gradual slow allergic reaction that lead upto a massive aniphlaxic shock on October 6, 2015. After going severely downhill once Ben got completely out of my system, my Rheumy started me on Arava trying to buy time hoping for a new "MAUB" infusible drug to come out, but that is not working; so looks like we're on too IVIG. I too take a slew of other meds, cellcept, plaquenil, etc. in an attempt to control my disease(s).
Have you always taken the IVIG and Ben together? I can't imagine what it would be like taking both honestly, it took me almost a year to get adjusted and able to function normally to Benlysta. Once I did though it was a God send! My Rheumy did mention that I would be wiped out for a week or so after each IVIG infusion, I figure at this point if I can get 3 good weeks back each month it will be worth it. How long did you feel wiped out for a week or more? I have not been able to find information on dosing and how much they dose each day. I struggle with maintaining a healthy weight, currently I am fighting to stay above 90 lbs. Has the IVIG negatively affected your weight or bone density in any manner? I am so worried about both at this point. Also, has it helped to stabilize your kidney or any other organ damage?
I guess the other thing I am worried about is being infused and then staying in a hotel not my own home because of the germs. I am not an extreme germaphobe; but worry my system is going to be compromised and I'm going to get sick. We do stay at nice hotels, but still germs are germs. My husband has been wanting to purchase an RV, but the thought of dealing with that is exhausting to me. I would rather purchase a second home, so we have some debate there. I need to speak with our account in regards to tax deductions and things of that nature in regards to all of this. The cost alone of all of this is stressing me to no end, which doesn't help.
Do I understand you correctly though that IVIG actually improves a person with lupus' system to where it is not attacking itself by replacing the bad B or T cells with good? I'm sorry, these are all questions I have for my Rheumy, but I was so overwhelmed when I saw him on Tuesday I didn't know what to ask and I don't see him again until March 8th.
Sorry to ask so much at one time, thank you again for your input.
Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.