Quote:
Originally Posted by autoimmunesux
Hi en bloc
I am now being tested for sjogrens, as the dr thi ks I have that in addition to the autoimmune autonomic neuropathy. I tried the florief plus many other meds and had reactions to all and that is why only doing ivig. Being you did ivig for 11years I am assuming it helped, if you don't mind me asking are you now doing worse than before you quit. Also why did you stop the ivig after getting aseptic meningitis? Did the dr decided or was it a personal choice? For after I had it the dr gave me the option to quit but said with the paraneoplastic antibodies I have I likely wouldn't get better without it, being we tried so much already.
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Yes, I noticed a difference in how I felt after stopping the IVIG. I really didn't realize how much it helped until I stopped. However, my Sjogren's has progressed significantly over the last few years, so I still might have gotten worse even had I continued IVIG. That is a hard call to make.
I'm actually really surprised that you continued to receive infusions after aseptic meningitis. Was it confirmed via LP (spinal tap)? IVIG typically causes whopper headaches lasting a few days post infusion because it crosses the blood/brain barrier. I did have numerous 'headaches' after infusions, but the aseptic meningitis was different and severe. My white cell count in the CSF was over 700 (normal is 0-5). I sometimes wish I could try it again, but my bout of aseptic meningitis bought me 7 days in the hospital and 30 long days of recovery. My neuro won't even consider it again right now.