Just had 1st ivig infusion-any success stories?
Hello, I am newly diagnosed with MG (2 months ago), neuro put me on pyridostigmine right away. It took about 2 weeks to start working and whether coincidental or not, my droopy eyelid and double vision went away after about a month. During that time, my droopiness switched from one eyelid to the other so my neuro ordered a ivig (privigen) infusion, 5 days, 10%, 30g 300ml per day. I tolerated the infusions really well & the last one was a week ago. I’ve felt more fatigued than energized since the infusions. Also having a weird side effect of my toes and arches causing my feet to occasionally spasm or feel tight. So I’m wondering if the above is just normal for my first ivig infusion and when can I expect to start feeling better with more energy?
I would say ivig takes a few days to start to feel the benefits, and peaks out after 2-3 weeks. For me i could not speak, eat, swallow, lost control of 2 fingers when typing, and within about 3 days i could start to eat and drink normally again, speaking was about the same. Get treatments every 4 weeks (x 4 treatements now) and have yet to go back to having those awful symptoms. The double vision & droopy eye went away with prednisone, well before IVIG treatments.
I’m so glad the ivig has relieved your symptoms. I’m at one week since the last of 5 daily infusions (round 1) and can’t tell any difference other than I’m fatigued. But to be fair my symptoms were much milder than yours to begin with.
