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Thread: Building Resistance to Rituxan

  1. #11
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    Default Re: Building Resistance to Rituxan

    Hay,

    i started rtx every 6 months and about 2 years ago started suffering at 4.5 to 5 months and got put on 4 month infusions, 8 months ago I stared suffering at 3 to 3.5 months and now staying on 4 month infusions x2 two weeks apart and 3 months ago now take methotrexate weekly to try and level things out some more.

    6 years in and still finding out what works, I know I work too hard in a stressful environment IT environment, but love my job.

    ;-)

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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  3. #12
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    Default Re: Building Resistance to Rituxan

    That’s quite a history Ben! ‘I’m sorry you had to go through all that to discover what worked for you.
    Although both my son and Iwere treated with Cyclophosphamide, Methotrexate, high dose prednisone and more over the 20 years since our diagnosis, Rituxan has been the drug of choice since to avoid the physiological damage from the other drugs.
    we’ll see what the Rituxan effects are this time. Since I’m in very bad shape and it takes at least 5 weeks to work, no telling right now what the future holds. If the beta blockers don’t work on my Malignant Hypertension or the CT Angiogram shows anything today things could change.
    This situation is crazy now as my son needs Rituxan but has lost his insurance coverage for any out f network coverage due to across the board policy changes even with his best possible instance coverage! He has serious GI involvement. So a big stressful x country move has now been added to the mix.
    Best of luck Ben in the future for your successful treatment. Systemic Vasculitis is not an easy disease!

  4. #13
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    Default Re: Building Resistance to Rituxan

    Quote Originally Posted by [email protected] View Post
    That’s quite a history Ben! ‘I’m sorry you had to go through all that to discover what worked for you.
    Although both my son and Iwere treated with Cyclophosphamide, Methotrexate, high dose prednisone and more over the 20 years since our diagnosis, Rituxan has been the drug of choice since to avoid the physiological damage from the other drugs.
    we’ll see what the Rituxan effects are this time. Since I’m in very bad shape and it takes at least 5 weeks to work, no telling right now what the future holds. If the beta blockers don’t work on my Malignant Hypertension or the CT Angiogram shows anything today things could change.
    This situation is crazy now as my son needs Rituxan but has lost his insurance coverage for any out f network coverage due to across the board policy changes even with his best possible instance coverage! He has serious GI involvement. So a big stressful x country move has now been added to the mix.
    Best of luck Ben in the future for your successful treatment. Systemic Vasculitis is not an easy disease!
    Sorry your son have lost his insurance. Please check in this link if there is a way to help him get rtx

    https://www.wegeners-granulomatosis....tx-co-pay-card

    I also tag @whatthewhat - I remember that years ago she posted something about rtx for those who can't pay for it... I hope I remember correctly.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  6. #14
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    Default Re: Building Resistance to Rituxan

    Thanks for your concern about my son’s Rituxan. He has great private insurance which covers all his medical but it’s in California. All medical insurance has cut out out-of-network coverage, with exception of emergencies. We may be able to get the it covered as an emergency.....

  7. #15
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    Default Re: Building Resistance to Rituxan

    Thanks for tagging me back in the thread, Alysia. I have heard that the Healthwell Foundation (pediatric wing of Genentech) no longer gives grants to Pediatric WG patients for Rituxan. :-(

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  9. #16
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    Default Re: Building Resistance to Rituxan

    In agreement what Alysia said, my WG dr. in 2014, my first flare, decided to use RTX only after the symptons begins. I received 3 RTX infusion until now, two years of interval from one to another. He uses this medical procedure trying to avoid hipogamaglobulinemy, IgG falls. In al three times the WG didn't make damage, only initial and inespecific symptons, never lungs or kidneys. To me it is working, thank godness. When you find the research, please, send it for us, Alysia.

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  11. #17
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    Default Re: Building Resistance to Rituxan

    Quote Originally Posted by Eduardo View Post
    In agreement what Alysia said, my WG dr. in 2014, my first flare, decided to use RTX only after the symptons begins. I received 3 RTX infusion until now, two years of interval from one to another. He uses this medical procedure trying to avoid hipogamaglobulinemy, IgG falls. In al three times the WG didn't make damage, only initial and inespecific symptons, never lungs or kidneys. To me it is working, thank godness. When you find the research, please, send it for us, Alysia.
    I posted it also above.
    Here it is

    https://ancavasculitisnews.com/2018/...-comments/?amp
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  12. #18
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    Default Re: Building Resistance to Rituxan

    Thanks! Did you see, Loic Guillevin's research? My Doc. follows French line. Thank once more.

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  14. #19
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    Default Re: Building Resistance to Rituxan

    Quote Originally Posted by Eduardo View Post
    Thanks! Did you see, Loic Guillevin's research? My Doc. follows French line. Thank once more.
    If I’m reading the 2014 study for the French Vasculitis Study Group Dr. Guillevin appears to recommend RTX. Will look into his other research. Thanks.

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  16. #20
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    Default Re: Building Resistance to Rituxan

    I may be late to this party but I am in this boat right now.
    I've had RTX for at least 7 if not 8 years in various protocols under Addenbrookes. Last June I have the new generic brand of RTX called Truxima. I reacted to it and felt no better following the infusion. I went back in October and had another armful of RTX but the old MabThera RTX. I then reacted to this. Again I didn't find it made me feel much better so had one last go this past January and reacted to it again.
    I'm still having symptoms but no active signs of disease in my sinuses or my bloods but I feel like I'm about to flare.
    Prof Jayne is hoping to get me on the Orencia trial once the RTX is out of my system so I am holding on for that. The plan is to get me off RTX for a few years and hopefully I will then be able to go back to it.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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