Answer to Prednisone

Hi Jet:
Oct. 2008 I was diagnosed with CIDP and started on 20mg of prednisone. I improved within a month and the next month the pain went away. The dosage depends in part on the size of the person. I’m a small lady.
In the past 10 monthes my neuro has reduced the pred 5 times and I now take 10 mg every other day.
He is hoping to take me off the prednisone completely and has notified the physician in Salt Lake City who provided a second opinion on my nerve and muscle biopsy that my improvement has been dramatic.
I walk around fine in the house and on any even surface, however when I go outside I always use my walker. My feet and shins have a lot of numbness and I am very careful when I walk. I fell 5 times before the diagnosis.
I hope I can get off the prednisone completely and the neuro says to be patient, because he says the nerves in the feet and toes are the last to come back.
I am left uncertain about my recovery, because if I have a relapse then I will need to resume the prednisone again according to my neuro.
I know that prednisone is a nasty drug with nasty side effects and the longer it is consumed the more harm can be done.
I seems that CIPD has an individual profile for each of us and we all suffer in different ways. It’s probably the same with the prednisone and how it affects each individual.
I was never offered IVIG or plasmaphersis, and I haven’t needed anything for pain since last December. The fatigue and weakness are gone and I can walk with my walker for 3 hours at a time without resting. I also use the exercise bike and treadmill in our clubhouse.
Getting used to an uncertain future ie. whether I will walk normally again and whether I will face a mild or severe relapse or recover completely has made me think in more creative ways about facing whatever happens.
I was also diagnosed with diabetes a few months prior to the CIDP diagnosis.
My sugar control has been very good even though the prednisone can elevate sugar levels and even cause diabetes!
I am 7l, just retired because of the CIDP and I don’t even know if my Medicare will cover IVIG, although I wrote to my Congressman about the bill in congress for IVIG to be included in Medicare coverage. I am not sure, but if my doctor mandated IVIG then I could probably get it.
I wish you well, Jet, and the more information we have about this inscrutable disease maybe the better we can deal with it!