Reply To: For those who get regular IVIG infusions, how often do you get them?
I get IVIG every 3 weeks for my CIDP. I use to be on IV Steroids and was switched to IVIG 5 months ago. Without boring you with a long story, suffice it to say that the “plan” is for me to stay on the 3 week treatment plan for awhile. Once I get to the point where I improve to where I don’t feel I need another treatment after 3 weeks, then the doctor will change me to a 4-6 week plan. I believe this would keep stretching out until maybe I reached a remission.
Personally, I do find that the IVIG helps me, but it’s a short term help. I call my CIDP life a “rollercoaster” ride. I have a few days that are really ‘up’ (good) and a few days that are really ‘down’ (bad)… and all the rest of the days are in between. I believe the IVIG allows me to have those good days (usually occurs for me 7-10 days after treatment). Without the IVIG I don’t believe I would have these good days. BTW… ‘good’ days for me are when my balance is significantly improved and I have no fear of falling. I can walk much better and faster (still with cane though). But I can’t seem to maintain the really good days for any more than 1-2 days every 3 weeks.
My ‘bad’ days however, seem to be fewer and less ‘bad’, as I keep taking the treatment. I want to improve on a 90 degree scale… but the reality for me is that my improvement goes on a 1 degree scale. Seems to take a LONG time and one wonders if they will ever get back to ‘normal’ or ‘healed’ again.
For me, after much time, I have decided to not linger on determining if/when I will be back to ‘normal’ again. It’s a waste of energy. Something to do, but doesn’t accomplish much! One thing I have found after living with CIDP for over 2 years and discussing with other patients… this disease affects everyone differently… so do the treatments. I sincerely hope the treatments will help you. I also hoped this answered your question.