Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone, does anyone have any information on how to get IVIG authorized by my health care insurance? I received a denial from HAP for IVIG infusions which was submitted by my neuro. I have been taking 20 mg prednisone, 50 mg imuran and mestinon 60-90 mg 4-5 x a day for 4 months and the improvement has been slow and the side effects of the steroids and Mestinon are rough at 90 mg of Mestinon. My neuro says I am at 60% improvement but I still need the assistance of a cane and cannot walk for less than an half of mile without being out of breath. I also can't stand too long without having muscle pain in my back upper and lower, so my neuro suggested the IVIG as a treatment plan/ I also have weakness while on the meds. My neuro suggested IVIG in an effort to get me back to work by March 1st, however HAP denied the auth. because I had not had a crisis therefore IVIG was not warranted. Also, per HAP there was not enough evidence that IVIG was a successful treatment for MG. I definitely will be appealing HAP's decision and my neuro stated she will do the same. Its hard for me to understand why HAP would rather a patient go into a crisis ending up in ICU instead of allowing the IVIG and preventing a crisis, omg. Any and all suggestions and/or comments requested.
Has anyone had IVIG without having crisis prior to receiving treatment?
Try the appeal. My neor is use to so I would bet yours is too.
Good luck
In the pre-ACA days when insurance companies could refuse to cover MG patients, they did. Now when they have to take us, they really insist that to spend that much money every month on us, we really are in an emergency.
Not sure when the ACA gets repealed this year, if we are going to be back in the un-insured pool, so figuring out how to get along without IVIG and PLEX are something each of us needs to consider.
I never cared to try IVIG, as I wanted to treat the cause -- immune system creating bad antibodies, rather than the symptoms as IVIG does -- temporary relief. I figured if I was in a life-threatening crisis, I would take it, but not just to make my wait for the prednisone to work easier. Sort of overwhelmed my frugal nature to think of spending that much every month so I could be somewhat better.
Good Luck
Now I go to the infusion center for five consecutive days once a month and the infusion center is outpatient. I switched insurance companies in January because of the costs.
Now I have no copay and no out of pocket. Medicare picks up the tab. I take 150 mg of Imuran and 15 mg of Prednisone daily. No Mestinon, it did not work for me. I am in a good place now. Feel pretty good. I still have some minor breathing issues and vision issues, but nothing major. Good luck to you. It took about a year for the IVIG and the Imuran to work, but now its good
I hope you get it figured out. good luck, al
Good to hear you have found a balance of treatments you can afford that work! Hope it continues for you in the future. The goal of everyone is to find that mix of treatments that works.
Good Luck
Russ