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, my name is Quen1966. I have a question for anyone that can help me. I was approved for Medicare and is receiving IVIG. If anyone is receiving treatment and has Medicare. I need to know how the out of pocket cost works? After looking at the different Medicare supp and advantage plans there seems to be at least $4300 in out of pocket cost. I need to know if you had to pay $4300 towards your initial treatment of the new year or how does the cost for IVIG work after we are approved for Medicare? Even though I was approved for SSDI there seems to be new obstacles of financial cost for my treatments. Any information will help. Are there any programs that can help assist with out of pocket cost besides medicaid for MG patients.
welcome to the group, see that you as all medicare recipient are swimming to see what we are getting as payments in all that
by what i am reading and being approved with ssdi , i would contact them to eplain what are the parameters left unsaid and clearify what will be your out of pocket payments for your ivg
i am patient of mg since 2011 and fortunatly i have all covered, since i have medicare and medicaid
if you are in a state with extented medicacaid you should have no problems.
best of luck (fighter)
Thanks for responding to my post, God Bless.
I do not believe this to be true - what makes you say that?
Most of us with MG have a goal that we get our MG symptoms under control and get back to being functional. Usually we aren't diagnosed until we are in rough shape, then start a treatment plan that first gets the MG symptoms better rapidly, then some long term immune suppression to keep them at bay.
IVIG is extremely expensive and rarely allowed for ongoing treatment unless other treatments don't work. However it is used for the initial "quick fix" treatment to allow time for the other to work.
I got by without MG although I was pretty bad off by the time I was diagnosed. I took lots of Mestinon (pyridostigmine) to get through each day and started prednisone to suppress my immune system at the same time. After a few months of prednisone, my MG was much better and no longer was I in danger of a breathing crisis.
For decades MG patients took immune suppression and Mestinon and the majority got by OK. In the past few years, IVIG is becoming used much more. There are several reasons including the very high profit that the medical institutions earn on each $30,000 treatment that has to be repeated monthly; Medicare has decided to fund it almost automatically for MG folks if a neuro recommends it; and it does work good immediately (days) relieve the symptoms of MG for a few weeks before needing it again.
I was offered IVIG too, but chose not to take it for these reasons:
it would tie me to the clinic or hospital for a few days each month
it would not actually solve the underlying problem of an immune system run amuck other than for the extreme short term
I had no faith that any insurance including medicare would continue to pay for treatments that could cost them nearly 1/2 million dollars a year to keep me functioning
I was unwilling to have that much spent on my treatment unless there was no other reasonable option -- just felt shocked at that much being spent for a few weeks of improvement.
I felt uncomfortable knowing that each IVIG was the combined, mixed, blood components from at least 1000 strangers with who knows what kind of lifestyles. In the past all sorts of assurances that blood was safe have been shown to be wrong.
So I reserved it for an emergency that never came and just piled on the mestinon when needed (up to 8 pills during the day) and took high doses of prednisone at first.
By the way, myasthenia gravis only is progressive if untreated. It is our immune system churning out antibodies that attack our own neuromuscular junction. When the attack is stopped by immune suppression,, we have almost 100% regrowth of the damaged or destroyed parts. Most folks do pretty good with treatment and can live mostly normal lives. Something like 15% have difficulties, 15% go into remission, and the majority figure out a long term treatment and get back to decent lives.
Good Luck
Russ
i tought i get back to this because it seems urgent to forward some additional inofrmation regarding our druggs plan associate with medicare.
this will affect all of us whom have the d option (druggs)
beside my medicare whom will pay for ivg in the hospital, i have my d plan with AETNA, which at this time is associated with cvs,, and it look like all insurance co. are trying to get in the ban wagon
so each of you whom are in this condition, please call medicare to find out which insurance will pay for ivg, as in january these insurance companies are suppose to dell their drug plans to others, thus you will b
as i have contacte them, no iformacion was given, excuse they dont know
e preventing disaster
this is my advise to whom may need it and find themselfs holding the bag
merry xristmas and happy new yar to all (fighter)