Reply To: The ups and downs of this disease

April 14, 2019 at 10:11 pm

Hi All,
The questions are never ending right? I have been dealing with CIDP for three years. Once my neuro figured out the right combination for me I have been mostly stable for almost two years. At the start of my journey I was taking high doses of prednisone (80 mg per day) and IVIG every couple of weeks. I currently go for infusion every four weeks, and I take 10 mg of prednisone every other day. Unfortunately, it appears that the taper of the prednisone is starting to have an effect on my four week spread of IVIG. I start to show weakness a couple of days prior to IVIG. We were hoping to try a five week spread. I experience pins,needles,zaps,twitches at any given time, however I am able to tolerate all of that. The weakness, not so much.

I’m very interested in opinions on cellcept. I think that is my next step. Need to get off prednisone.

I also will pay the price if I over exert. It’s a balancing act. I am thankful for a solid 3 weeks of feeling almost normal. Maybe the cellcept – IVIG combo will get me back to a solid 4 weeks.

It’s a bummer! Thanks for listening!
Kathy