I just started IVIg therapy for my autoimmune small fiber neuropathy with autonomic symptoms. I started 3 weeks ago and had 5 infusions over 5 days.
I go back next week for round two of 5 X 5. 1 month later, same thing, 5 X 5.
I am hopeful that this loading phase will really knock this stuff out of me for a while, at least that is what the Neuro thinks and I think it is possible as well.
So far I have alot more energy than I had before and hope to get back in the gym if my body will quit fighting me back.
The first couple of days went well, infusions were given at normal titration without issue. Had slight headache on 4th and 5th day, but pre meds made it go away. On Saturday, the day after the last infusion I had a nasty headache that lasted about 20 hours, then poof, went away.
The main thing is to not fall asleep during the transfusions so you can keep drinking water. You should be getting up to go pee about every 30 minutes.
Hydrate a day before, during, day of, after, day after. I cant stress this enough!
Hope this helps,
N1
Quote:
Originally Posted by clstewart81
Hello! I just went back to the neuro last Friday and he has suggested I go on the immune globulin (IVIg) treatments every month. I've done research but would like to hear from those that have done this/had success/no success. Thank you!
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