Gingergrrl
Senior Member
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Yes exactly the main problem hypotension nothing works for it
I Take midodrine snd fludrocortisone
The first thing that actually helped my hypotension was IVIG plus Midodrine. I'm usually around 100/70 now (vs. 80/50 for 2-3 years no matter what I did)! Florinef (fludrocortisone) did not raise my BP and gave me horrible headaches/head pressure when I tried it in 2014. I also take Atenolol for POTS.
I do not know what will happen w/my BP once I stop IVIG. I did very poorly with IV saline, and I do not think my improvement from IVIG is from the fluid, vs. that it temporarily lowers the autoantibodies that are causing some of my autonomic dysfunction. Have you been tested for any autoantibodies?