I have been treated with prednisone only since first diagnosed 2 yrs. ago and have weaned down to 5mg. every other day for the last 6 mos. My Neuro stopped the prednisone 2weeks ago after 2 years of continued improvement and and doesn’t expect me to backslide. My top-notch doctor said I will keep healing and the rest of the nerves will slowly come back. I am cautiously accepting his prognosis even though from day 1 he has never given me any false hopes.
Fortunately all the pain disappeared after the 1st three months of prednisone treatment. It might be interesting to note that when 1st diagnosed I began taking 600 mg of alpha lipoic acid, a nutrient,along with 2000mg. of acetyl carnitine, an amino acid. Later when I learned about clinical trials.gov I doubled these amounts and am still taking them. There’s no magic bullet, but I’m wondering if the prednisone and nutrient combination made the healing better and faster.
I also have deep faith in positive energy, prayers, God’s Blessings and also the miracle principle. Sometimes just a small miracle can have sweeping changes in our lives. I’m 72 and 1/2 and I don’t take off running or play tennis, but I easily take long walks and can manage some simple dance steps and that’s a blessing!
We are all like snowflakes when it comes to symptoms and treatment plans.
I have been uplifted by the strength, courage, knowledge and helpful sharing that has been generated by the members of this forum.

Alice has been home for 2 weeks now and is continuing to improve. Just as Dr Burt told her, some days she has more energy than others, but all in all she feels that the CIDP is out of her body, and pains she feels come more from muscle soreness than anything else.

Her strength is increasing, and we try and make it out every day for a walk. As she is regaining muscles she hasn’t had in such a long time, there are days where she feels the soreness of a heavy work-out – but, as she says, this is good pain.

She does need a lot of sleep – clearly her healing body requires it. She wakes up early – but goes to sleep late afternoon..

..so we won’t be having any big thanksgiving dinner – but the spirit will definitely be there – as we feel so thankful for this treatment, and all our friends and family who made it possible.

Happy Thanksgiving to You.

(sophie)