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?
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.
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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.
Obamacare removed the ceiling, and it has not been repealed.
Even private insurance must abide by this law.
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Thanks for the update. I didn’t know there was an insurance ceiling and that Obamacare wiped away the ceiling. I get ivig treatments now for 5 months, 5 consecutive days, every 4 weeks. I am responding well but no idea how long it will take for remission. I was diagnosed last November 2018. Had a lapse of 4 months when insurance transferred to home treatment but the speciality pharmacy rejected my doctor’s prescription for ivig because cost is double when out of network. I now go to Yale Neurology but on an urgent basis, it took me 3 months to get in with a doctor there. Thus the gap. EVERYONE PLEASE REMEMBER TO VOTE FOR A DEMOCRAT PRESIDENT IN 2020 OR OUR INSURANCE WILL BE WIPED OF CURRENT BENEFITS BY THE REPUBLICANS.
Thanks, Anne
I’ve been on ivig for 11+ years 51 treatments a year if there was a cap I would be dead by now and unable to respond to this thread.
Yes I Max out my co-pays in January every year, but that is it.
If they repeal the law then we will have to march on D.C. I guess, or grifolds corporate office.
My insurer (BUPA) in Queensland, Australia, advises that they would continue to pay for the infusions as long as my specialist considered them necessary. Fortunately this means I don’t need to deal with ‘ceilings’.
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