Reply To: New to Cidp? I think?

January 31, 2020 at 8:18 pm

I brought up Cellcept to my neurologist and she wasn’t fond of the idea. She claims to have patients on it but for some reason prefers to push IVIG. Currently I’m on 30g x 3 of Privigen every 4 weeks, plus 30mg of Prednisone daily. Due to the shortage, I’ve only just began IVIG in December so only 2 rounds so far. As I mentioned already, I’ve only noticed minimal improvement.

It did take months before the doctors could figure out what my problem was and get a diagnosis. I’m sure a lot of damage has been done though I’ve never reached the point where I couldn’t walk or drive when I have to. At worst, I’ve only experience a bit of wobble in my legs during the early morning before taking my steroids.

At this point, I’m not looking forward to the huge inconvenience of 3 days of IVIG every month. I’m hoping to find a trial somewhere for stem cell therapy.