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SNOWFLAKE?
I have much compasion for you! I started on IvIG (Octagam) (once a month) with a few side effects but I took Tylenol and Benadryl prior and drank lots of fluids. I still had minor headaches and was in a “fog” for a few days evey now and then. Later, My Neuroligist ordered fuids prior and after infusions and that helped a bit. I was also taking prednisone and Mestinone for my treatment. Everything was working well, until it wasn’t. After about 9 months the IvIG stopped working and off to the hospital. The ER where I was taken did not havbe the proer protocols in place (make certain there is a neurology center available wherever you are transported…we though there was, but)
They did the worst thing they could have (high infusion of prednisone) and exererbated the situation…then onto the neurology cente at the right hospital…very long story shortened-
Plasmapheresis for a ten day stretch and was put back on a regiment of prednisone. mestinione and cellcept…recovered after 4 months and now I’m on Ultomiris (every 8 weeks now)and cellcept and down to 5mg prednisone and doin ok…minor side effect are sstill there, mostly subtle headaches, “air hunger”. Going about my daily life and working around the effects.
Keep trying and adjusting…you will find your normal.
May Gos bless you!