Reply To: For those who get regular IVIG infusions, how often do you get them?
I think I mentioned before that my treatment that started in early January was IVIG every 2 weeks but my spinal fluid showed the elevated protein levels. I am supposed to do the every 2 week infusions for 6 months before my first real evaluation, nerve conduction, strength tests, etc. I don’t notice too much difference after my infusions. I have had 6 so far. Only had a slight rash after my loading dose so no bad side effects for me. My mystery after all the research I have done is that I feel much better by being active versus rest, which seems to run contrary to what I have read about not overdoing it. Houston has a chapter meeting on Saturday and a physical therapist is the speaker so I will be curious to hear what they say as I have not initiated pt yet. I do the cidp exercises I found online but as I mentioned, I spend a lot of time working in the yard and spent 5 hours working outside today in a warm (high 80s) sunny day in Houston. My legs muscles do get sore and my nerve activity is from the knees down but the pain is low and very tolerable. Is it the IVIG? I hope so. I see my new neurologist this Wednesday and have a ton of questions for him but Tom is right in that everyone is different as to how this disease progresses and how they react to treatments. Best of luck in trying IVIG if routine treatments are in your future. Keep us up to date on your progress. Jeff