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Thread: RTX for maintenance

  1. #11
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    I was on the Ritazeram Tril but cos of my flare i'm now off, which sucks. I really liked doing the trial. They're still going to follow me as like a side note i guess haha.

    Sorry to hear that you will be needing Dialysis or a transplant, thats a rough ride.

    Quote Originally Posted by gilders View Post
    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.
    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

  2. #12
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    Quote Originally Posted by drz View Post
    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.
    That is interesting drz. I didnt even think about antibiotics or future infections. Let me now what your consultant says ongoing. I would be interested to know what the latests research says. I didnt tolerant AZA or Mycophenolate. I'm too young for Cytoxan. This latest round of RTX has knocked me out a but more than i was expecting although i worked out it was my 12th infusion in 6 years haha! So that might explain why.
    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

  3. #13
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    Quote Originally Posted by Alysia View Post
    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.
    Oh it is most definitely about money - a single round of RTX costs the NHS 3,000. 1,000 of that is just for me to sit in the chair for 6hrs. Its madness. I'm fortunate that i come from one of the bigger/ richer counties in the UK. Sadly lots of other people are less fortunate in other parts.

    The Prof didnt seem too concerned about yearly infusions. Although i think his thinking has changed somewhat over the years as a few flares ago he did not like to overuse RTX but now its different.
    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

  4. #14
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    Quote Originally Posted by gilders View Post
    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.
    I've never had a remission longer than two years - but that falls into what Dr Jayne expected and told me. Cant help thinking he made a self-fulfilling prophecy out of me!
    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

  5. #15
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    maybe we can make our own poll: we have enough weggies who are on rtx for many years, we can make a poll asking: how many years do you have wg, how many years are you on rtx, in what frequency, what changes do you see over time - for better, for worse, do you think that the rtx is still as strong treating you as it was in the beginning ? etc. just need some technical help in building the poll. what do you think, my friends ?
    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.

  6. #16
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    Alysia
    really it is good idea, we should ask for RTX for remission induction and RTX for remission maintenance both.

  7. #17
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    first we need to think about all the questions that we want to ask. then we need to build the poll - where is andrew ? is it possible ?
    thanks for your input nagesh.
    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.

  8. #18
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    Alysia! Brilliant idea!! I LOVE it!
    Andrew can we somehow have a way to create polls? That would be fabulous info to be able to access!!
    Where do you get these brilliant ideas Alysia! Bravo!!!
    Last edited by Gab122; 09-17-2016 at 09:35 AM. Reason: could be misunderstood
    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

  9. #19
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    Survey Monkey?

  10. #20
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    Ya know what i was wondering about today - (this could be a Poll) .... They say that GPA might be 'activated' by an infection or environment/chemical or such.... I wonder if any of you all recall an infection prior to your symptoms starting that eventually led to GPA diagnosis? I don't think I had any infection myself before my May symptoms started in my ears. I don't think I had any chemical exposure but have I used spray paint w/o fully following directions/ or cleaning products? yes... If we had a poll here, maybe we'd get down to the bottom of what activates this disease? Maybe we all had something weird in common like owning bearded dragons w/ fungal problems at some point prior to the disease starting. I did.


    Maybe we could make some great contribution to understanding this disease!
    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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