Reply To: Exacerbation – scared

June 6, 2012 at 1:38 pm

Hi buny, there is no acceptable level of dysfunction. It would be different if you did not respond to ivig and feel better. That would likely be damage that would stay. But you describe improvement when you get ivig. Now the key is to just kick it in the butt and start repairing. As I have mentioned before, you have to stay ahead of it or it is like you are treading water, jogging in place getting nowhere. The loading doses for a year (for us anyway) was what allowed him to heal so wonderfully. As we tapered we watched for any change so that we could adjust accordingly. You should be able to expect your doc would want you to be at your best level. I don’t understand why some docs are so reluctant to give ivig as needed. I can’remember who said it, but someone on the site said that ivig is hard to come by valuable or something like that. While it is expensive, life is invaluable. The docs don’t take into consideration the long term cost of taking care of a person unable to walk, eat etc. A nursing home is $8700 dollars amonth, not including drugs, any procedures, therapy etc. It just seems that if someone responds to ivig or whatever protocol that works for them, there should be no hesitation. So keep pushing for more ivig!

About the amount of time, you could get a fanny pac and do it at work and then have the nurse disconnect during lunch, after work whenever. Once you would get established, there is even the option of the sub q, which you could do on your own whenever you want during that day. Don’t get discouraged, keep communicating with your doc and push for what you feel will make you start healing.