Reply To: For those who get regular IVIG infusions, how often do you get them?

April 5, 2017 at 11:41 am


As Tom pointed out, CIDP affects each of us differently. It really depends upon how long you had it before it was caught and if it ate into the nerve proper.

First, are you being treated with anything to suppress your immune system? For instance I’ve been on prednisone since December. There are other medicines as well. If you aren’t, you need to have a conversation with your Dr.

In January I lost the ability to walk. IVIg was a miracle and I returned to near 75% of my former self by the end of that month.

Unfornately, about two weeks ago I felt myself regressing.

As I type, I’m getting an IVIg infusion. (I started on Monday and will finish Friday).

I already feel stronger. So give it a chance as it depends on your starting point.

I’m also seeking a second opinion this Tuesday. I do not think the prednisone is suppressing the immune system and its side effects are mounting, including painfully swollen feet and increased blood sugar.

Also, I concur with Tom on a number of things. Recovery from CIDP is not linear. It is like a rollercoaster. Ups and downs and progress as a result seems slow.

Also, if you exert yourself too much, I find I pay for it for days. Pace yourself. I know it is hard to do.

I wish you the best of luck and feel free to ask any questions and please update us on your results.