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I was just approved for Rituximab!!!

Discussion in 'Rituximab: News and Research' started by Gingergrrl, Jun 9, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I wanted to let everyone know that I was just approved for Rituximab by my insurance tonight! My doctor (who is a rock star in case he reads this board :star::star::star:) e-mailed to let me know that I was approved! I will be doing the initial two doses of Ritux at day Zero and day 14 per autoimmune protocol at 375 mg/BSA (body surface area) dosing formula. He went through many layers of appeals but stayed optimistic that it would happen even when I began to lose hope.

    I will be doing Ritux at the local infusion center where I have been getting IVIG the last ten months, in conjunction with my MCAS doctor (who is also a rock star but zero chance he is reading this board LOL). I was also just approved for an additional six months of IVIG (prior to the Ritux approval) and part of me thinks that once my insurance figures this out, they may take away the IVIG so I will do everything in my power to at least do one more cycle of IVIG next week before anyone notices :D.

    I am so appreciative for this opportunity and do not take it for granted. I have had incredible improvements from IVIG but not to the level that I can walk more than about 20-25 steps at a time or drive a car, and still use wheelchair 100% outside of my apt. I am hoping that Ritux will be able to knock out the autoantibodies beyond what I was able to achieve with IVIG. I know it could not work for me, that I could be allergic to it, or any number of scary scenarios but am willing to take the risk and report back on here for everyone to keep track.

    I have no idea when I will receive the first dose b/c there are many things to coordinate with both doctors, the infusion center, insurance, logistically with my family, etc. So my best guess is end of June or early July? Am not tagging anyone (b/c too many people to tag!) but I cannot thank everyone enough who sent me e-mails, texts, PM's and prayers of encouragement in addition to solid information, journal articles, and facts re: Ritux. I am so appreciative for all of you and still a bit shocked that it was approved :jaw-drop:.
     
  2. Hip

    Hip Senior Member

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    Excellent! Best of luck with it!
     
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Awesome for you!

    I'll be living vicariously through you.
     
    ahimsa, Hutan, Mary and 10 others like this.
  4. Murph

    Murph :)

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    WOW! I'm seriously excited for you.

    I've been quietly following along with all your posts but from everything I'd heard about US insurance I wasn't getting my hopes up! So this is amazing. Hope it transforms your life and I look forward to hearing all about it!!
     
    ahimsa, Hutan, Mary and 10 others like this.
  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    :balloons::gift::trophy::bouquet::tulip::balloons::gift::trophy::bouquet::tulip: Congratulations! I hope is restores your health!
     
    Sancar, ahimsa, Hutan and 9 others like this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    I wasn't either and once I learned I was approved for additional IVIG today (which I was thrilled about) I took it as a sign that I probably was not going to get approved for Ritux... so no one was more shocked than myself to find out I was wrong! Edit: My doctor replied to some follow-up questions that I had and said that I was indeed approved for six months of additional IVIG (every 3 wks like before) plus two doses of Ritux. Am stunned.
     
    Last edited: Jun 9, 2017
    EMilo, rosa, lafarfelue and 13 others like this.
  7. Jesse2233

    Jesse2233 Senior Member

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    YESSSSSSSSSS!!!!!

    Congrats Ginger, I'm so happy for you!!

    So you'll be doing IVIG and RTX simulataneously?
     
    Sancar, Pendergast, ahimsa and 8 others like this.
  8. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Woohoo! @Gingergrrl! So very very pleased for you! :thumbsup::balloons::hug:
     
    Pendergast, ahimsa, Mary and 8 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much @Jesse2233 and @antherder for all of your support and it means a lot to me.

    They will be done simultaneously as in during the same overall time frame but not in the same day or week. I am only capable of tolerating a certain amount of fluid/saline at slow infusion speed so we will have to space it out. I will be scheduling phone consult w/my main doctor, and then see my MCAS doctor in person two wks from today (6/23), and hoping to know the exact plan after both have occurred. But my plan is that I will do IVIG next week in 3-day split dose as I have done all along (if the Infusion Center can schedule me on such short notice) and then approx 2-3 wks later do the first infusion of Ritux.
     
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  10. viggster

    viggster Senior Member

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    That's great. I'm curious which insurance carrier you have.
     
    MEMum likes this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    Am happy to share via PM but have decided not to post my insurance info publicly for multiple reasons.

    Edit: Just sent you a PM.
     
    MEMum and Jennifer J like this.
  12. daisybell

    daisybell Senior Member

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    Thrilled for you!
    Here's to your ongoing improvement....:thumbsup::balloons::balloons::balloons::balloons::balloons::balloons:
     
    Sancar, Mary, MEMum and 6 others like this.
  13. Jesse2233

    Jesse2233 Senior Member

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    That's so great, I'm only guessing of course, but there's potential for great synergy with these two treatments
     
    Sancar, Mary, MEMum and 3 others like this.
  14. Nickster

    Nickster

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    @Gingergrrl I am so happy for you and that is wonderful news! Miracles do happen and you have a great team of doctors that are helping you with this process. Please keep us posted as you give us hope. You show us to never give up!
    Ann
     
    Mary, MEMum, Binkie4 and 4 others like this.
  15. Gingergrrl

    Gingergrrl Senior Member

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    Jesse, I totally agree that there could be great synergy between these two treatments and wish I could explain scientifically why I feel this way but it would be so inadequate! From my non-doctor perspective, I feel that high-dose IVIG will continue to modulate my immune system and knock down/replace the autoantibodies that are already fully grown whereas Ritux will kill/deplete the B-cells and stop new autoantibodies at the production level. I also feel that as Ritux weakens the immune system by wiping out the B-Cells, the IVIG could strengthen it back up a little at the same time and hopefully reduce some of the risks of Ritux alone.

    Thank you so much, Ann, and I have literally been trying to figure out what was wrong with me medically and researching treatments non-stop for over four years as if it were my full-time job. I had so many wrong twists and turns that I have lost count. I also had several horrific experiences with doctors but it only takes one good doctor to fight for you to make up for all of the bad experiences.

    Am praying that your son finds the right treatment. I was so sick mid-2015, I thought I was literally going to die of anaphylaxis and went for close to two weeks with just water with dextrose/salt b/c I could not tolerate any food. So many treatments failed, and so many people told me not to do IVIG, but I felt I had nothing much left to lose at that point and have not had an allergic reaction to food or smells in ten months. So you are right, you cannot give up and your son is young and hope is out there.
     
  16. Nickster

    Nickster

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    See you are still looking out for others with this crazy disease and it is so appreciated! You are such a good person! I completely understand the disappointments with multiple doctors and you found the right one to go the distance and truly care about helping YOU! I am so excited to hear about this next venture and am so hoping for success for you! @Gingergrrl
    Take care, Ann
     
  17. kangaSue

    kangaSue Senior Member

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    Terrific news for you and it hope it exceeds all expectations. Inwardly, I say bah humbug but only because I wish it was me too.
     
    Mary, MEMum, MeSci and 2 others like this.
  18. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, KS, and as much as I pray it will help me, I will give an accurate and honest update as I do Ritux so I do not misportray anything. I wish everyone who wanted to try it could have the opportunity as well, I really do, and hopefully some day, they will.
     
  19. Skippa

    Skippa Senior Member

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    Oh wow, you go @Gingergrrl !

    So pleased for you, I hope it brings much improvement!
     
    Mary, MEMum, Binkie4 and 4 others like this.
  20. leela

    leela Slow But Hopeful

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    This is awesome news, @Gingergrrl , so pleased to hear this! I hope this is your game-changer, and we look forward to hearing about it as things unfold.
    Our lil' pioneer! :hug:
     
    ahimsa, Mary, MEMum and 5 others like this.

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