Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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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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    Thanks and I always bring my charger for IVIG so it's already packed in my bag!
     
  2. adelheid55

    adelheid55 Senior Member

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  3. Jessie 107

    Jessie 107

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    Best of luck to you, we are all rooting for you and will be thinking about you
     
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  4. PeeWee

    PeeWee

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  5. dangermouse

    dangermouse Senior Member

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  6. Gingergrrl

    Gingergrrl Senior Member

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    Just got the IV in my arm and about to do to the IV Benadryl (pre-med). So I think it will be another 30 min or so until I start the Ritux :nervous:
     
  7. dangermouse

    dangermouse Senior Member

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  8. leela

    leela Slow But Hopeful

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    Oh my gosh! We're all rooting for you, @Gingergrrl ! :balloons::hug:
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Started the Ritux at infusion speed of 10 and then bumped up to speed of 25 and now at 50 for the next 30 min. My maximum speed will be 80 for the final 7 hours. So far absolutely no reaction but too soon to know it won't happen later.
     
  10. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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  11. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and I have been at the 80 speed for a while and no reaction whatsoever. My nurse said the very worst allergic reactions occur in the first hour and I am past that which is reassuring. I am eating breakfast now that I brought w/me and wanted to be past the first hour before eating anything to be safe.
     
  12. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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    After this it will never be as frightening. ;)

    Ohayō gozaimasu (Good Morning). :thumbsup:
     
    Last edited: Jul 18, 2017
  13. Mary

    Mary Senior Member

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    Ditto! :thumbsup::hug:
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    All good and no allergic reaction whatsoever! I have about three hours to go and my nurse is going to give me 25 ml of IV Benadryl toward the end so I have it in my system when I go home to be safe.

    I never needed the solu-medrol at all which is great. For the next 3-4 days I'll alternate taking Zyrtec & Atarax as allergy preventative but I am pretty sure I will be okay. My second dose of Ritux will be in 2 wks on 8/1.
     
  15. leela

    leela Slow But Hopeful

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    Thank you for including us in your real-time adventure...so very glad to hear it has gone well!
    :bow::star::trophy::trophy::trophy::star::bow:
     
  16. neweimear

    neweimear

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    Fantastic gingergrrl, thanks for sharing, u are doing great!! Delighted for you xxx
     
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  17. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    Nice to see that you were looking forward to your second dose before the first dose was finished! :thumbsup:
     
  18. dangermouse

    dangermouse Senior Member

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    :thumbsup: Well done @Gingergrrl that's brilliant, thanks for sharing with us :hug:
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    That is kind of funny but I actually am looking forward to the second dose and the upcoming months to see if I am a responder! The infusion ended up being much easier than I expected both during and after. I had some reaction to the 2nd IV Benadryl (and do not do well with Benadryl in general and use Atarax instead). But there is no IV form of Atarax so for safety, I chose to go with the Benadryl and do not regret it.

    The 2nd Benadryl was infused over eight minutes and we learned for next time that this is way too fast for me. It ended up burning my vein as if wasps were stinging me but when my nurse flushed the IV with saline, it went away. Next time, we'll infuse the Benadryl over 15-20 min along w/extra saline. I also felt very out of it after the Benadryl, in a way that does not occur with Atarax, but it passed within a few hours.

    This morning when I woke up my throat was a little narrow/swollen (allergically) but this went away once I took Zyrtec. I had some nausea, headache, and muscle pain but am told all of this is normal from Ritux. I took painkiller and chewing some ginger gum for the nausea and it went away. My doctor said some patients have such severe nausea after Ritux that they take Phenergan and Zofran but I told him do not need these prescribed and the nausea is minimal. If this is the worst of it, I will be thrilled!

    I will be doing a blood test before the next infusion to check my B cell level. I did 600 mg of Ritux, which is the dose calculated for my body surface area for autoimmune disease, versus the 1 gram dosing of the Fluge & Mella ME/CFS study. I do better in general with lower doses and my doctor said that the first infusion might be enough to get my B cells to zero but if not, the 2nd infusion definitely will. We will monitor my B cells and symptoms, and I will most likely have the 3-month maintenance infusion in November, assuming my insurance allows it, but I leave this up to the discretion of my two doctors.

    The Ritux prescribing info said that dangerous or fatal infusion reactions usually occur within the first 24 hours (so I am safe!) and 80% of the time, they occur with the first infusion, vs. the second, which is also comforting. I really mentally prepared myself for the worst and it did not occur! We set up a schedule with family and friends through Fri so I will have 1-2 people with me at all times but at this point, I am not even sure it is necessary b/c the main side effect I am experiencing is mild to moderate nausea.

    Hoping this helps others who are on the fence about Rituximab although I know each person is totally different in their reactions. I had joked that I would tolerate Ritux better than I tolerate Methyl B-12 & Folate and I was correct!

    Thank you so much everyone for your support in this thread, PM's, e-mails, etc, and it was very comforting and helpful. I am blessed to be part of such a wonderful world-wide group of people.
     
  20. dangermouse

    dangermouse Senior Member

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    You've done really well @Gingergrrl ! Thanks for sharing your experience so far. :thumbsup:
     
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