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    Default Building Resistance to Rituxan

    Hi everyone,
    Has anyone built up a resistance to RTX?

    I?ve been on it for 4.5 years now (2000mg every 6 months) and I?ve noticed GPA symptoms come back towards the end of the 6 month intervals. My doctor mentioned something offhand about building antibodies against Rituximab and when I did research on google scholar, it seems this is the case. There is even a blood test for it called ?HACA? which I will ask for the next time I see my doctor. Have you gotten this test?

    Has anyone here built up a resistance to RTX? Did you then switch to cytoxan? I?m scared that I?ll have to switch medications because RTX has worked so well for me.

    Any insights would be appreciated.

    Many thanks!
    "Drink your tea slowly and reverently, as if it is the axis on which the whole earth revolves—slowly, evenly, without rushing toward the future. Live the actual moment. Only this actual moment is life." -Thich Nhat Hanh

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    Default Re: Building Resistance to Rituxan

    Alysia and others might have better insight than I. All I know is on FB I had chatted with "Lennie Saurkraut" (did I get that right?) about this same topic, since he and a woman on the WG FB group had been regularly taking Rtx since before it was FDA approved for WG. So, a long time! I am interested in this topic because in the world of pediatric-onset WG, the majority of Drs prescribe Rtx every six months. If you consider that kids are most often get sick at the onset of puberty that would mean several decades of the every-six-months protocol. Basically most indications are that most people will not build up immunity to it - but there is some indication that some people do in fact build up the immunity. In our daughter's case in consultation with her rheumy and his okay, she only receives Rtx as needed, and gets her labs done frequently to monitor that need.

    Another concern, at least for pediatrics, is wiping out the immune system so much that the child becomes dependent on IViG and we want to forestall that. Not to mention that the biggest lethality for Weggies comes from infection once the diagnosis period has passed. We wanted to keep her immune system as strong as possible while still hobbling it.

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    Default Re: Building Resistance to Rituxan

    Hi whatthewhat!
    I?m sorry to hear that your daughter has this disease, but she?s lucky to have you doing research and keeping on top of it!

    It?s definitely encouraging to hear that some people have manage to be on RTX long-term. I?m keeping my fingers crossed that these symptoms are not WG-related. In the meantime, I?m asking my ENT on Thursday for a HACA and a CD-19 blood test. I?m only 30, so I would potentially have decades of every-six-months RTX ahead of me, granted it keeps working.

    One other side note: if RTX ever becomes too expensive, call the RA Rituximab copay card hotline?they have been wonderfully helpful.

    In terms of IVIG, I?ve have two maximum-strength doses of it and while the infusions themselves didn?t feel great, the next day I felt like a superhero. I have another dose coming up and am looking forward to that afterglow. Still I hope you can keep your daughter?s IGG levels up and her immune system as intact as possible. Keeping my fingers crossed for all of us Weggies!

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    Default Re: Building Resistance to Rituxan

    I will share what I understood from my WG dr. over the years. Unlike meds which stop working after some time of use, rtx keeps its efficiency over the years. My WG dr. Has experience with it with rheumatic patients more then 10 years.

    The problem (which I think is not only rtx related but all immune suppresed meds related) is that over the years the immune system becomes more weak, down to a point where it cant fight infections. For example my IgG levels dropped down significantly from 2013 (when I started rtx) until today. Its getting closer to the "red" line. So my WG dr. and I decided to try to go for my next rtx in an interval of 7 months instead of 6 months. (Below the normal might demand an Igiv).

    And thats the second issue, which is not clear enough - the question of how often is it right to go for rtx IV. Until our last meeting, my wg dr. allways said that it is better to go for rtx every 6 months, even without WG symptoms, in order to "reset" the immune system and "make" it "forget" to attack itself. Also in order to prevent flares with all their damages.

    BUT, in my last meeting with him, he said that a NEW research compared those who went to rtx every 6 months to those who went according to WG activity and found out that both groups did well, although the second group recieved less rtx. I didnt find the article yet.

    I asked him about damages from the wg activity and he said that it is also a point to consider.

    It sounds like we need to find a very delicate balance between holding the WG by rtx and allowing the immune system to be high enough to fight infections.

    Of course, when one is not in remission, when wg is flaring or smoldering, one should get rtx.

    I hope I wrote it clear enough. If I will find the new research I will attach it.
    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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    Default Re: Building Resistance to Rituxan

    I know my treating doctors and my consultant at Mayo both said they would only give me RTX again if it was really necessary since in their experience it can tend to become less effective with frequent use. Of course for many routine maintenance treatments are necessary and this is the only good option for them. Hopefully new treatments will be discovered that become even more effective.
    Last edited by drz; 11-04-2018 at 02:29 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Building Resistance to Rituxan

    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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    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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    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.

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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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    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!

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