Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Cost of Rituximab treatment privately

Discussion in 'Rituximab: News and Research' started by Kenny Banya, Apr 15, 2017.

  1. Kenny Banya

    Kenny Banya Senior Member

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    What are the cost estimates for Rituximab treatment for ME privately?

    Separate from plane flight & private accomodation costs
     
    emsho and outdamnspot like this.
  2. AndyPR

    AndyPR Senior Member

  3. Kenny Banya

    Kenny Banya Senior Member

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    Wow! That is a hell of alot of money!
    Thanks anyway
     
  4. Riley

    Riley Senior Member

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    It is, but it's a bargain compared to the cost in the US. I think it costs $40,000+ here (sorry it's been a while since I read about it. I don't remember the exact number).
     
    AndyPR likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    Unless you can get insurance to cover it. This process will take a long time but is always worth investigating IMO (for those in the U.S.).
     
  6. Butydoc

    Butydoc President

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    Hi Riley,
    In California, 500mg cost the hospital approximately $3,700 per the drug representative from Genetic.

    Best,
    Gary
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    I assume this is just for the Rituximab (RTX) itself and does not include the infusion costs, supplies, other fees/charges, etc? Does this mean that insurance (if it covers RTX) is billed $3700 just for the 500 mg of RTX? I still have no idea if I will be able to get RTX but my insurance is billed about $16K for each day of IVIG (for all of the charges, not just the med, but the grand total) and my part is around $300 to $350 (not sure why it varies)? I can't imagine that RTX is less than IVIG but maybe it is?
     
  8. Butydoc

    Butydoc President

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    Hi Gingergrrl,

    I believe the hospital cost is $3700, but charge much more. For my first infusion, my fee including all cost was $8500. The oncologist is a friend and isn't charging me his fee and only charging me he cost for 1000mg and infusion cost.

    Best,
    Gary
     
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  9. Sushi

    Sushi Senior Member Albuquerque

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    If you are comfortable doing so, please let us know how you respond. Was this your first infusion?
     
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  10. Butydoc

    Butydoc President

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    Hi Sushi,

    Yes, this was my first infusion. It took 8 hours. I had a few episodes of mild allergic reaction and tachycardia which responded to iv benadryl. My health had deteriorated prior to the first infusion so it is somewhat confusing as to how much the infusion made me more symptomatic. My second infusion is scheduled in 6 days.

    My decision to start Retuximab was because of my unusual family history. My mother had CFS/ME and Tayayasu,s arteritis, an autoimmune disease, my brother died from multiple sclerosis, my other brother has CFS/ME as does two of three of my children. I'm the test monkey for my family.

    Best,
    Gary
     
  11. Diwi9

    Diwi9 Senior Member

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    @Butydoc - Wow, that is a lot of immune dysfunction in one family. Scary. I hope you are a test monkey responder...my fingers are crossed!
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Butydoc thank you for sharing about your experience and will be thinking of you and praying for an amazing outcome.

    I am very interested in your infusion speed, how much total fluid volume you received, and some questions that may not pertain to others (although they may and are important info)!

    I think you do not have MCAS if I am remembering correctly? Did you test positive for any autoantibodies prior to RTX?

    Thank you in advance for any info!
     
  13. Butydoc

    Butydoc President

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    I received 1 1/2 liters of 1/2 normal saline. The first 100mg of Retuximab was given over 3 hours. The infusion center has an extensive experience with this drug and claim most infusion reaction occur around 2 -3 hour after the infusion has started. The most common reaction they see is chills/fever. The infusion nurse claims that she hasn't seen any reactions after the patient leaves the infusion center but has never treated someone with CFS/ME.

    In terms of MCAS, no one in my family has shown any signs of allergic symptom including me except when receiving Retuximab. My entire family including me are in a gene expression study with Dr Alan and Kathleen Light. Hopefully I will receive some results soon.

    Sorry for taking this thread off topic.

    Best,
    Gary
     
    Last edited: Apr 15, 2017
  14. Gingergrrl

    Gingergrrl Senior Member

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    I don't think you did b/c you quoted the price that you pay privately (if I understood you correctly) and the thread was about the price. I was very curious if the price you quoted was just for the RTX or the total cost which you explained and was what I'd suspected. I really appreciate the info and I think others will, too.

    This is how OMI normally does it as well but I can only receive 1/4 to 1/2 liter of fluid total per day (which works when we split my IVIG into 3-days) and I think RTX would have to be done in the hospital for me which will probably make it not an option which is such a bummer (unless I win the lottery). Thank you again for the info.
     
    Woolie likes this.

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