Cally
I have been struggling with autoimmune autonomic neuropathy for four years, a few months ago I started ivig, but before that I was bascially bedridden with severe lightheadedness, numerous episodes of syncope daily, extremely low blood pressure, and pain from other autoimmune diseases. I did ten weeks of ivig, the first week I did three days straight, then once a week for the remainder of the time. It was a rough ten weeks to say the least, I got aseptic meningitis 3 times, was extremely fatigued, ect for five days after each infusion, but two days before the next infusion I would feel the best I had in years, and that is what kept me going. After the ten weeks I had the best feeling three weeks in years, and no syncope (as long as I didn't over do it), plus my blood pressure was in the normal range. Unfortunately after those three weeks I started to get worse again and am now at the worst ever. It has now been almost 3 months since last infusion, but thankfully I start ivig again Monday and this time I will do it for three days straight the first week, then once a week for five weeks, and then once a month for a year and then slowly taper in hopes I will never get this bad again. Sorry this is so long winded, my point is that it may be a horrible time during for a few days after the infusions but in my opinion all the pain was completely worth it, I swore I would never do ivig again after aseptic meningitis but each week I kept going knowing that as painful as the side effects can be the results are amazing. I also found that getting iv fluids before, during, and after infusions and drinking as much as possible greatly reduces side effects and didn't get aseptic meningitis since then. Hope this helps, are you going to continue with the ivig? How long will you be getting it? We may be doing it at the same time