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.
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Obamacare removed the ceiling, and it has not been repealed.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.
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.
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’.