Reply To: A few questions? New and scared

December 23, 2013 at 4:20 am

CIDP can be life-changing, but is not life-ending. My case was severe and it forced me into early retirement (I was 63), but I have recovered to about 95% in three years and my residuals are minor. I seem to be in remission, although I still take medication. I do not use IvIg.

IvIg is usually administered in an initial loading dose every day for five days. After that, maintenance doses vary depending on the patient’s response. I had two five-day doses, but never went to maintenance doses because it seemed ineffective. My primary treatment was plasma exchange, followed by oral drugs.

For those who do not respond to IvIg or plasma exchange, a new treatment may become available. This is a stem cell procedure and it is in clinical trials. Some who have participated have written here about it and said that it worked for them. I don’t know when it will be available as a standard treatment.

At this stage, it is better to focus on beating it rather than worrying about the worst-case possibilities. Get a good neurologist who is familiar with CIDP and in whom who have confidence and take the treatments offered. Work hard at rehabilitation if it comes to that. Do your best to get through it with a mind to going back to work. Don’t give up!