Linda M–your trip to Chicago

February 2, 2011 at 1:22 am

Linda–can I ask you: how long do you have to be on IVIG and/or Imuran to consider them a “failed protocol”? I’m glad you were able to be evaluated by Northwestern. Why are you being weaned off IVIG? and how is the decision made by a doctor as to which immunosuppressant to prescribe? There are many immunosuppressants out there.

IVIG is the only treatment my neuro MD has me on and said I will be on this for 2-3 years. After that, I don’t know. My neuro also referred me to a “specialized neuromuscular” MD & this doctor isn’t doing anything different than my 1st MD in regards to treatments. Although I am getting better with IVIG, but still I don’t feel completely normal (fatigue, endurance, not completely strong as I was before).
What kind of side effects did you experience from Imuran?
Sorry for all these questions. I’m one year into CIDP and there are so many unknown aspects of this condition.