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Thread: RTX for maintenance

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    Default RTX for maintenance

    I've been caught out with my second flare in two years. I was on MTX for maintenance but this time round, as before, it wasn't holding remission for me.

    The wonderful Dr Jayne from Addenbrookes has put me back on the good stuff of RTX 2 doses two weeks apart, which I've just finished and yearly top ups from here on in.

    Who else is having six monthly/ yearly top ups and how are you doing?

    Just curious as i tolerate RTX well but being that RTX is a relatively new drug it does worry me that my body could get used to it if used over a number of years.
    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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    I am currently on rtx with infusion every 4th month (as per Ritazarem trial protocol). I was very ill after my last infusion, but believe it was a bug/virus that I caught rather than a reaction to rtx.
    Unfortunately my kidney function has declined to the point where I need a transplant or dialysis whilst on rtx.
    I also worry about long term side effects and the possibility that your body may "get used" to it and it no longer works.
    Diagnosed April 1995

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    My Weg expert at Mayo shares your concerns so my treatment plan is avoid RTX again unless it is deemed essential to controlling my Wegs. He is involved in a lot of the major research in this field and often shares information about the latest research studies that might pertain to my treatment of Wegs. To date I am unaware of any research studies pertinent to this issue. And no better alternatives to regular treatment with RTX have yet been found for controlling Wegs for many people so it is not like you have a lot of better options.

    I know that I have developed allergies to several antibiotics that I used to rely on the treat my frequent infections that go along with my Wegs, mainly ear and sinus infections and bronchitis. So I am concerned that RTX could become another drug that might not work for me if I use it frequently. Maybe my Mayo doctor shares my concern due to my history of developing allergies or maybe he has some hunches or impressions from his experience and observations about what their research might suggest in the future about frequent usage of RTX for treatment of Wegs. So far I have been fortunate that my mainteance drugs of AZA and pred has controlled my Wegs adequately so i have not yet needed RTX again but that could easily change any day. I maxed out on CTX so that is not an option for me again.
    Knowledge is power! Wisdom is using it to make good decisions!

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    my son 19 year old 7 years back diagnosed with WG, For remission induction he had Cyclosposmade six monthly infusions, there on on aza for maintenance,
    had kidney flare 3 years back took 2 infusions of 1 gm RTX infusions in a gap of 15 days further on aza for maintenance, recently 9 months back again had kidney flare took 2 infusions of 1gm RTX in a gap of 15 days. Now, Rehumatologist has planned to put him on RTX 500mg once in six months for two years as maintenance by removing all other maintenance drugs.

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    Mtx never worked for me. Tried more then a year.
    Rtx is used both for flares and for maintenance in my case. 2000mg when wg is active. 1000mg in remission. Which didnt last on this doze. I get rtx since 2013 every 6 months.
    My wg dr. (Btw, Sam, he is consulting with prof. Jayne) has experience with rtx many years now and he is not concerned at all. He says that the more we use it to keep the WG quiet, the greater the chance is that the immune system will forget to attack itself.

    It is interesting how they think differently in different countries....

    And.... It's not a nice question, but is it possible that money issues are also involved in the decision making about rtx ? Seems that they dont give it as they should in the US ? I wonder about Australia... Israel & UK sounds similar... as I remember from dr. Phil he got it since 2011 every 6 months.
    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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    I've had two infusions (1000 mg each) for maintenance since remission, each about 10 months apart (the docs monitored my B-cells and when they showed up again, I got an infusion). It's been 7 months since my last infusion and peripheral B-cells are still 0. My docs are thinking of giving me a 500mg infusion the next time the B-cells show up. After that, I'm not sure what they'll decide - could be just wait and watch. I don't have kidney involvement however.

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    Quote Originally Posted by Alysia View Post
    It is interesting how they think differently in different countries....

    And.... It's not a nice question, but is it possible that money issues are also involved in the decision making about rtx ? Seems that they dont give it as they should in the US ? I wonder about Australia... Israel & UK sounds similar... as I remember from dr. Phil he got it since 2011 every 6 months.

    In Australia the doses are basically the same as yours and Sams.
    It is also used a first option for many newly diagnosed now
    Keep Smiling
    Michelle


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    I'm wondering about this idea that if used too much ritux could become ineffective. Can someone fill me in on this theory or is it proven to be true? Is it a common belief? My dr's never mentioned it.
    Thx
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    I suppose rituxin could lose effectiveness over time of application, most drugs do lose potency over time due to overuse, etc. But, in asking that, you may be concerned over nothing. If one goes that long on Rituxin and still doesn't start to recover, there are deeper problems...and, frankly (something else for you to ponder), undue concern causes stress & that may be the more dangerous track. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Quote Originally Posted by Alysia View Post
    He says that the more we use it to keep the WG quiet, the greater the chance is that the immune system will forget to attack itself .
    I hope you're right. My periods of remission have grown between each replapse/flare, so perhaps immune system does get used to Wegeners lurking around and doesn't bother to deal with it.
    Diagnosed April 1995

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