Reply To: Diagnosed with CIDP in August

November 3, 2014 at 10:11 pm

Hello and Welcome,

The GBS_CIDP website has lots of good information within it’s different sections. Make sure to explore it all.

Some patients will respond to IVIG when they have CIDP, some will not. A few doctors have said the positive response to IVIG is presumptive proof that the CIDP diagnosis is accurate. Clinical Trials (and practical experience) have demonstrated that different patients need different amounts of IVIG given at different intervals.

In other words, every patient, and every condition, are different.

I had a course of IVIG with demonstrated positive results that the doctors (neurologists) discounted as ‘arbitrary.’ They then discontinued the IVIG.

Other patients on this website have reported benefiting from corticosteriods such as prednisone or a specialized treatment called Plasmapheresis (PE) sometimes in conjunction with an immunosuppressant such as Imuran- azathioprine.

You would probably do yourself a favor to find a neuromuscular CIDP specialist. This website includes a list of “Centers of Excellence” should you live nearby one, go there.

Be proactive, be happy. The downward spiral is hard to break. The Foundation offers contact people with peer support groups and functions you can attend.