Thank-you for answering @Butterflake
I very much appreciate you taking the time to go into detail about
your infusions. I am 62 y/o and have had SLE most of my life. Symptoms started in teen years & diagnosis in my early 20's.
You said the first 6mo.'s of your Benlysta Infusions that you were bed ridden. Was it because you were in a Flare? Perhaps some of these other diseases you mentioned are a result of years of medications used for treatment. I guess we can have a love/hate relationship with some of these meds! My stomach(pain) is a mess & the Colcrys has me running to the bathroom. ~ I pray the Benlysta has slowed any progress that SLE could have made in your body.
I have many things that you do: SLE, Sjogrens, Raynauds, Fibro, Osteoporosis, GERD, High Blood Pressure, Stage 1 Diastolic Disease and am currently dealing with Pericarditis & Pluerisy
The heart issue is why my Rheumy prescribed Benlysta, because after a regimin of steroids at high doses, Colcrys & Meloxicam, it's still hanging on. The side-effects scare the gee-willickers out of me! My energy level is very low too. I thought Benlysta was supposed to help this? I did hear that it takes a few infusions to notice any difference. I did try Rituxin but did not notice any difference. No noticeable side-effects. The infusion was 6 hrs long! Two weeks later another, then they wait six months and do two more. I had the first two. Four per year.
It's wonderful that the surgeon's can put these ports in patients! My veins are hard to find - they hide when they see the needle coming! jk
I'm not familiar with the IVIG infusions but read it's used for CVID. I'm happy it makes you feel good
Again, Thank-you for your answer!
Wishing you a Merry Christmas (if you celebrate) and a Blessed Healthier New Year!!!!
Love & Prayers, klee54