Reply To: Treatment options

December 28, 2013 at 6:09 pm

I have been on this CIDP journey since February of this year, and would like to give you a ray of hope. I am at this point in my treatmnet at about 95 to 97% of where I was pre diagnosis. Walking without aid, (even over snow banks) and working a full time job. (I have a little fatigue, but it is manageable) I am one of the lucky ones from the posts I read here. I happened to be assigned a Neuro that was familiar with CIDP and had a diagnosis in only days. My treatment was started inpatient, 5 days of IVIG.(No side effects to date.) I was on FMLA leave for three months, returning to work full time after easing into it for two weeks. My Neuro was worried that I was returning to soon, but I have done very well. I responded after my “first” IVIG treatment and with P.T. (until June) have been improving steadily since, with two minor relapses. When these occurred my Neuro just repeated the loading dose and then increased my IVIG from one to two days. I am being slowly eased off of the IVIG and the pulse dose of prednisone. We are trying to find the sweet spot, to prevent further relapse. I would be remiss if I didn’t mention that at this time we are exploring alternatives to the prednisone, but this is because I have another medical condition. I am looking forward to a future where I may be able to use nothing. I currently get my IVIG from a Home infusion service. The nurse comes to my home and I recieve my IVIG over several hours. It has now worked out that I recieve my treatments on weekends, so it does not disrupt my work schedule. I am however covered under FMLA, for intermittent leave. If I need to be gone from work for doctors appts. IVIG treatments or if I relapse again, I do not have to worry about being fired for absence from work. (Something you might look into, If you haven’t already, so you don’t worry about a job loss.) I know this whole process is scary, but I find that I do much better when I stay as positive as possible. I still believe that I will recover fully. I can’t speak to other treatments at this time, because I have no experience with them. That is not to say I have not done my own research into possible alternatives. I do know that IVIG has worked wonders for me. I hope this helps. I wanted you to hear from someone who is doing well, making steady progress to a “full” recovery. Good Luck, I wish you well.