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Thread: Aza and Rituxan.

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    Default Aza and Rituxan.

    Anybody taking both of these meds? I have been on aza for almost 3 years and have done 4 rounds of Rituxan. I am down to 2.5 mg pred. Fatigue is my main symptom. Labs have stabilized. Sed rate hangs out between 30-45, creatinine down to normal range for the first time.

    My question is, aren't both of these considered maintenance meds? I am wondering if I need both...but too scared to "stir the pot" and discontinue the aza. (The aza by itself was not working, hence starting the Rituxan. )

    TIA,
    Angela

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    Quote Originally Posted by Ruotsi1 View Post
    Anybody taking both of these meds? I have been on aza for almost 3 years and have done 4 rounds of Rituxan. I am down to 2.5 mg pred. Fatigue is my main symptom. Labs have stabilized. Sed rate hangs out between 30-45, creatinine down to normal range for the first time.

    My question is, aren't both of these considered maintenance meds? I am wondering if I need both...but too scared to "stir the pot" and discontinue the aza. (The aza by itself was not working, hence starting the Rituxan. )

    TIA,
    Angela
    Your sed rate still seems high for the standards my labs use. Is it? If so, why such a low pred dosage? More pred might help you reduce fatigue and inflammation markers if they are too high.

    As long as I am doing fairly well and tolerating the meds my doctors including the Mayo expert say no changes. Don't fix what isn't broken.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Yes my sed rate is high (should be <20). My sed rate has not been normal since pre-dx and my pred has been as high as 60.

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    Quote Originally Posted by Ruotsi1 View Post
    Yes my sed rate is high (should be <20). My sed rate has not been normal since pre-dx and my pred has been as high as 60.

    The sed rate is a manual test and not all clinics seem able to do it correctly. Is your CRP rate also high. My local clinic has trouble getting SED rate right, every time except twice their reading was too high even when other labs say it is normal. Mayo and the metro clinic get it right all the time. Have you done it anywhere else as a quality check?
    Knowledge is power! Wisdom is using it to make good decisions!

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    I have had it done at at Cleveland clinic and it was high then. My CRP is normal and has been for quite awhile.

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    Quote Originally Posted by Ruotsi1 View Post
    I have had it done at at Cleveland clinic and it was high then. My CRP is normal and has been for quite awhile.
    My understanding is the CRP is a short term and more current measure and SED rate or ESR is a longer term measure. My doctors give more weight to the current CRP or short term measure. If that is always normal then the ESR should not be elevated if it is being done correctly. My ESR at local clinic is almost almost high but the CRP which is automated test and not influenced by any human error is normal so we know their SED rate is not right and it is normal when tested at Mayo or other larger clinic where they do it right.
    Last edited by drz; 04-22-2016 at 09:38 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I understand and appreciate your input. We have consistently drawn monthly CRP and ESR/sed to focus more on a trend versus a specific result. Typically after a Rituxan infusion my sed rate drops for 2 months, then slowly starts increasing. Dr. villa-Forte in Cleveland recommends continuing using pred at current rate until my sed rate is normal...but I'm not convinced that will happen. Not to mention, how much help is this low amount of pred really contributing. At this point of I am very concerned about my bone health.

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    Quote Originally Posted by Ruotsi1 View Post
    My question is, aren't both of these considered maintenance meds? I am wondering if I need both...but too scared to "stir the pot" and discontinue the aza. (The aza by itself was not working, hence starting the Rituxan. )

    TIA,
    Angela
    Rituximab is used to treat a flare/onset and maintenance.
    A little over 20 years ago, when I was diagnosed, I was only on Cyclophosphamide for a short period as I could not tolerate it. At that time there were no other treatments available to me (except Azathioprine) as my kidneys were completely gone. The only option was to use high dose pred and use Azathioprine in high dose to treat my Wegener's. As remission approached I was kept on Aza for maintenance.

    I've had a few relapses in the last 20 years and my routine was quite simple - Aza and pred at high dose to treat flare/relapse and Aza and pred at lower dose for maintenance. This regime stopped working with my most recent relapse. Aza was stopped and Rituximab used to achieve remission and now I'm still on Rituximab as maintenance.

    So to answer your question - I have never been on Aza and Rtx at the same time.
    Diagnosed April 1995

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    Quote Originally Posted by Ruotsi1 View Post
    I understand and appreciate your input. We have consistently drawn monthly CRP and ESR/sed to focus more on a trend versus a specific result. Typically after a Rituxan infusion my sed rate drops for 2 months, then slowly starts increasing. Dr. villa-Forte in Cleveland recommends continuing using pred at current rate until my sed rate is normal...but I'm not convinced that will happen. Not to mention, how much help is this low amount of pred really contributing. At this point of I am very concerned about my bone health.
    I also see add Villa Forte (seeing her Wednesday, in fact). She's a great and caring doctor, and you should feel comfortable about discussing concerns and getting your questions answered.

    Have you mentioned your concern about bone health to her? She has always given me the time I need to express concerns and ask questions. Are you taking calcium and vitamin D? Have you had a bone density scan recently?

    Hope you get the answers you need to address your concerns!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    My beautiful Phil was on both rtx and aza.
    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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