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Living with Polyneuropathy CIDP, GBS, & CMT

Ceiling for Insurance


#1

Has anybody ever capped out on insurance? My insurance is making some changes, and I’m afraid if I keep taking ivig I will hit the ceiling. Is anyone on the steroid treatments? If so, how are you doing?


#2

The max on insurance can be met with IVIG usage. I was on steroids for one year after 3 years of IVIG. While the steroids gave me energy and reduced pain I had all the bad side effects so after 12 months I gave it up.
I gained 35-40 pounds and was mad and irritated and hungry all the time! Reid rage is real! I hated being so different than before, making my children mad at me,verbally abusing anyone. I had to stop it to save me.


#3

My husband had steroid IV’s before IViG. Neither has made any difference at all. He will start Rituximab in 2 weeks but it is even more expensive. If you have a cap, it is worth talking with the company and/or hospital to discuss this concern, in case adjustments can be made to allow you to continue without worrying about cost - you have enough to worry about without that issue.