Reply To: CIDP Diagnosed / Recovered / My Story

August 20, 2023 at 8:39 am

Thanks for your story.  I’ve been off and on prednisone for the last 6 years.  For me, it has never helped, but every time I have a flair up, the doctor adds it to the regimen.

Unfortunately it added around 60 pounds, mostly in my stomach. I’ve lost 35 lbs of it so far.  I should be off it by the end of the week.

I’m on CellCept as well, not sure how much it helps me.   I’ve has Plasma exchange, and that didn’t help very much.

The only medicine that helps me is IVig.

It is really interesting how some medicines work for some and not others.

And, the trigger for my CIDP seems to be vaccines.  The shingles shot I got in September of last year, triggered my latest episode in October….

Hope you continue to improve.