Myasthenia Gravis News Forums Forums Life Hacks and Tips The Costs of MG Treatments

  • Willem

    August 26, 2022 at 3:21 pm

    Good day Michelle, I Have a question about Mestinon 60mg tablets cost. I pay the equivalent of $130 for a bottle of 150. The question is; why so high now, as the FDA approved Mestinon as far back as 1955, yes 1955, so the Pharma have made their money, so why do the tablets remain this costly?

  • Maureen Gosz

    August 27, 2022 at 12:44 am

    It has just gotten ridiculously costly. Inflation hasn’t helped any. The cost of meds & Inflation, more is coming out than what’s going into the bank.
    It is getting very stressful. I did do the IVIG until my insurance company decided they weren’t going to pay for it anymore. It costed $25,000 a month for those treatments. I did it for 4 months, and then stopped. I really didn’t notice any difference being on it. I could never afford it. It just frustrates me when a person works your whole life, and pays for insurance, and when you really need it, they just send you a letter saying that they aren’t going to pay. I never was a person that would run to the dr for any little thing. I’m 61 & my husband is 63. So much for enjoying your retirement years. I’m still working, it’s not easy, but I have to. My retirement fund that I did have is gone. I just wish this government would start taking care of the citizens that live here, & not everyone else.

  • David W Covington

    August 27, 2022 at 2:21 pm

    I have been on Soliris for approximately 3 years and before that was IVIG infusions. With IVIG it was tried to extend out a week before the infusion and after 2 weeks added between infusions  I had to go back on IVIG at the same infusion schedule. Doing the paperwork with my doctor, I was approved to Soliris and this has kept me in check and having no signs or problems with MG.

    When I got the first of the claim statements and what was paid by BCBS I was just astonished by what was billed and what BCBS had agreed to pay. Being on Soliris I have had no reactions to it while being embarrassed by seeing the claim statements and my employer is having to pay for health insurance. At the first of the year, I had the surgical procedure of Thymotic done so that I hoped in the future that I would go into remission or reduced and not have infusions or medications.

    Being on this infusion therapy with medication has delayed me in going into retirement.

  • Monica

    August 28, 2022 at 9:26 pm

    I have been on Soliris for almost 3 years I see how much it is here in New York it is 42,000.00each time which you have it done twice a month. I am going to start Ultomiris soon not sure at this time how much that will cost.  But will find out Medicare pays for it and what it doesn’t pay my supplement will but still that is ridiculous. IVIG was about 5,500each time and I thought that was bad!


  • David S

    August 29, 2022 at 1:07 am

    The VA pays – you folks –  pay for my monthly meds.  I have no idea how much they would cost if the VA wasn’t paying directly.

    IVIG monthly, prednisone, Imuran and prednisone daily.

    It is interesting how the treatment costs for IVIGs is so different.

    Healthcare and pharmaceuticals conducts HUGE business.

  • Paul D

    August 29, 2022 at 8:25 pm

    About two years ago my neurologist started my IVIG infusions with a local hospital infusion center.  I met with an intake administrator who explained that Medicare and my HMO supplemental coverage would pay for part but not all but it would somehow work itself out.  I refused to proceed with the treatments until I was given an amount that I would be responsible for.   The intake person assured me that it would again work itself out.  I had four infusions over four weeks, never any indication of what the cost would be.

    One month later I received the bill from the hospital totaling over $37,000.00 of which I owed $7,400.00.  Obviously nothing got worked out!  I appealed the bill with my insurance provider and Medicare.  After four stages of appeals, the amount stands.  The hospital is suing and collection agencies are involved.  Coinsurance is often discussed as a percentage of the treatment’s cost but no cost estimate is ever given so the patient never knows what their costs will be but is always responsible.

    The important issue is that medical treatment is prescribed without any regard to the financial burden that is placed on patients and family.   This billing loophole has to change.  Countless lives have been devastated by the fallout.  The cost can be worse than the disease.

    “Physicians do no harm”


  • Charles Karcher

    August 31, 2022 at 7:52 pm

    I am puzzled by the above post.  I have been on Soliris since 1/20.  The hospital(infusion center is part of hospital)bills a horrendous amount to Medicare.  Medicare pays what it pays and by law the hospital is obliged to accept that amount.  My supplemental insurance pays what they pay and that’s that.  The only cost I have incurred for Soliris was the Meningococcal vaccines required before  beginning Soliris.  Medicare refused to cover them and all appeals failed.  Truly the only real costs I have had to pay myself have been the Part D drugs (Mestinon and Cellcept) that I take.  I know the post refers to IVIG but I was on IVIG before Soliris and had no out of pocket expenses for that treatment either.


    August 31, 2022 at 8:50 pm

    Thankfully my IVIG infusions and drug costs have been mostly covered by Medicare. When the hospitals were closed and I had to use a home infusion company, the IVIGs were NOT covered by Medicare, The fact that the hospitals were all closed to infusion patients did not change their position – they do not cover home infusions.

    By the way, the home infusion company – owned by a venture capital company – used old equipment as was not honest with me about the real cost of the infusions. My monthly infusions cost so much that I went to the Dr. and told him I would stop the infusions if I could not return to the hospital for them.  As if by magic the hospital started performing in- hospital infusions again. When I tried to file an appeal with Medicare the infusion company would never send the proper paperwork. What a con.

  • Charles Karcher

    September 2, 2022 at 7:20 pm

    In response to the above post, I guess pandemic response varied state to state and locale to locale.  My hospital did not close it’s infusion centers.  They had 3 and close one because it was not conducive to social distancing.  Other than restricting family and visitors it was pretty much business as usual at my infusion center.

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