Reply To: need spome advice on this cidp rollercoaster ride??

February 18, 2012 at 5:06 pm

I am not a doctor or a nurse but I keep rechecking your entry to see how many weeks between infusions – 12???? is that correct?

There has been a lot of info published lately that indicates most neuropathy patients are significantly underdosed. I had a lot of troubles with my IVIG infusions and it took a long time to regulate them and to find the right dosage. What I did find out is that I needed them much more often than originally prescribed. Most on this forum are getting their infusions every month. You might start there.
My advice – DO NOT CANCEL THE IVIG because you have just had (less than 24 hours of) relief. Think about how many hours you have suffered – and you will throw that over for a few short hours? NO WAY!
If this crazy disease has taught you anything is that there are so many unexpected twists and turns. I’ll bet all of us on this forum have experienced a glimpse into what life could/should/might have been/used to be – without that crazy nerve pain/neuropathy. And we will all tell you it changes back to the old CIDP pain in a blink of an eye.
KEEP ON GOING – ask your doctor about dosage and timing of infusions. Stay on course ! (and, like the rest of us, pray for a cure – or at least something to give us all relief).
Good luck and keep us all posted