Holding On

Hi!

I’m new to this forum, but have CIDP for the last ten years…recently, I did
switch doctors because the IVIG was so expensive…I read on the internet
about oral steroids. Doctor put me on Cellcept 2000mg daily and Predisone
80 mg daily….long story short…I have been in the hospital three times now
with the time being 2 1/2 weeks each time…home 2 weeks, then emergency
room again, then inpatient 2 1/2 weeks…the worst myopathy (total atrophy).

The IVIG worked…100grams monthly on a 24 hour infusion, done at home.
How stupid was I to change the treatment due to cost…my new doctor
never saw me the last hospital stay, never called, he sent a partner.

I’m still in a wheelchair…but, I do my own physical therapy…plus, I’m weaning
myself off the steroids without the side effects.

I’m on disability, but most likely will be dropped from the insurance carrier
at the end of the year, due to these hospital bills…one was 100,000 dollars.

Miami Girl 😉