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Thread: Help: what is the protocol

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    Default Help: what is the protocol

    I have consistently picked up Trace blood on my Multistix Urine dipstick tests the last 2-3 days. Last Monday (7.9), I went out of pocket and got my Creatinine tested directly through LabCorp (it was 1.2). On Friday, I went to Rheumy and had full labs (they are finished per Labcorp website, returned to doctor, so I will get results tomorrow). Test include microscopic urinalysis (to look for blood casts), CRP, and CMP.

    On a side note, rheumy has in house lab that already processed blood counts (normal but white is high due to pred), and my sed rate was 20 (it was 12 last month).

    When I was diagnosed in May via ANCA 3, PR3, and aleovar hemmorage, I also had trace blood in urine, but normal kidney blood labs and a negative kidney biopsy. Hospital nephrologist concluded I didn't have kidney involvement. I don't understand how I can not have kidney involvement despite having the blood in the urine. Blood in urine went away with heavy steroids, but it is now back.

    What has me most concerned is the fact that I just finished 4 weeks of RTX, and I am still on 50MG of Pred. If I'm having having a kidney flare, does this mean the drugs are not working? Am I one of the unlucky few that RTX is not a miracle drug? Should my rheumy went with cytoxan initially to induce remission (they avoided CTX because of the lack of kidney involvement and my lungs cleared up so much of Pred alone).

    Do I just wait for the labs tomorrow and if the kidney numbers are still normal then pump the brakes on freaking out? I read GPA can wipe out the kidneys in a matter of days.

    How should I handle this? Obviously, I explain the situation to my doctor, but again, if the kidney labs are in normal range (even though .95 to 1.2 is a significant jump in Creatinine), what do I do if the rheumy blows me off? I'm not confident in her GPA expertise.

    Oh, if this were only a month later: I have an appointment with Dr. Villa Forte of the Cleveland Clinic on the 14th of August....

    Thanks for all of the forthcoming advice. I know I'm only 2 months into this so I need to grow a spine (and quick), but 4 months ago I could have never imagined this would be my new life.

    All the best to everyone in this community....

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    Default Re: Help: what is the protocol

    Learning to cope with the anxiety and stress of being diagnosed with GPA takes some time. The main thing is find a good competent care team with considerable experience in treatment GPA to assist you in this process and learn from them.

    True GPA can wipe out your kidneys quickly but other things can also cause blood to be detected in urine test strips. Lab analysis of your urine can easily be repeated to get a better handle on what is happening. In the worst case scenario they can do another biopsy of your kidneys to find out if they are infected with GPA.

    Usually other lab work will support such diagnosis first. Many people seem to have blood detected in their urine with no kidney damage so these trace amounts of blood must then come from some other cause. If your lab work supports normal kidney function and remains stable you should be able to relax.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Help: what is the protocol

    Thanks for the quick reply. Do you have any feedback on the drug choice to induce remission (RTX vs. CTX)?

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    Default Re: Help: what is the protocol

    Quote Originally Posted by richard052018 View Post
    Thanks for the quick reply. Do you have any feedback on the drug choice to induce remission (RTX vs. CTX)?
    I was given both when diagnosed. They tried RTX first but quickly realized I was not going to live long enough to get any benefit from it so they switch to CTX IV initially but then switched to oral tablets after couple IV treatments since they are easier to adjust and my doctors also thought the tablets were going to be more effective. It took several months but I eventually reached what they considered a drug induced remission of GPA. I still had various residual GPA symptoms but they were not considered serious enough to warrant more RTX IVs. I continued on the maintenance meds for over six years of AZA and pred and expect I will do so till they find a cure for GPA or the drugs stop working for me.

    RTX has less side effects than CTX so it is generally preferred if your case is not serious enough to required CTX for faster results.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Help: what is the protocol

    Richard, Like you, I expected to see a fast response to my Rituxan infusions. That was not the case. I had another infection that lasted all winter. More infusions in spring, now I am just starting to feel stronger. Rituxan is a wonderful drug, but from what I read on this site it can take about three months to see results. Many of us have had to increase our Prednisone from time to time. It is most important to have faith in your doctor. I suggest printing out all the concerns you addressed in your post and hand it to the doctor. Go through each one, item by item. I cannot emphasize enough, stress makes our condition worse. Deep breathing and positive thinking will help you deal with the emotional roller coaster you are experiencing. By all means STOP looking at all the articles on the computer about this disease. Many are outdated, some are just plain wrong and many do not even apply to you. My husband tells me that 95% of what I worry about never occurs. I am praying for you.
    Masha

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    Default Re: Help: what is the protocol

    Hi Richard.
    It is too early to know if rtx works for you.
    Creatinine gives you a good indication about your kidneys.
    Blood in your urine can also be blader infection (UTI). Did you get back the results of the urine tests ? Did they take urine culture ? Do you have any symptoms of UTI ?
    Not once, right after getting rtx, I got some infection. Like UTI. If this is the case you will need to wait for the urine sample in order to know which antibiotic fitts.
    You are doing the best you can and the best possible.
    Just "pray, hope and dont worry". I send you prayers.
    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: Help: what is the protocol

    Hi Richard,
    I hope this finds you feeling a little better. Isnít it crazy how this disease can cause so much anxiety for all different reasons?
    To put your mind slightly at ease-I have had this disease for half my life. For 20 years I have had blood in my urine & am considered not to have kidney involvement. It doesnít matter if I am having a flare, what medications I am taking-I always have blood in my urine. Itís a crazy disease!
    Natty


    Sent from my iPhone using Tapatalk

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    Default Re: Help: what is the protocol

    Quote Originally Posted by Alysia View Post
    Hi Richard.
    It is too early to know if rtx works for you.
    Creatinine gives you a good indication about your kidneys.
    Blood in your urine can also be blader infection (UTI). Did you get back the results of the urine tests ? Did they take urine culture ? Do you have any symptoms of UTI ?
    Not once, right after getting rtx, I got some infection. Like UTI. If this is the case you will need to wait for the urine sample in order to know which antibiotic fitts.
    You are doing the best you can and the best possible.
    Just "pray, hope and dont worry". I send you prayers.
    Thanks for the feedback on the RTX. Everyone (drs. included) has pretty much advised me that it is way too early to tell if the RTX is working. I'll just weather the storm with the high dose pred and they will test B cell levels in 60 days or so.


    Can't say how great it is to have a group like this to ping ideas/concerns. My goal is to one day be the grizzled veteran around here calming the newbies.


    All the best to everyone!!

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    Default Re: Help: what is the protocol

    Quote Originally Posted by richard052018 View Post
    Can't say how great it is to have a group like this to ping ideas/concerns. My goal is to one day be the grizzled veteran around here calming the newbies.
    Hope you get there soon!!
    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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    Default Re: Help: what is the protocol

    Quote Originally Posted by richard052018 View Post
    Thanks for the feedback on the RTX. Everyone (drs. included) has pretty much advised me that it is way too early to tell if the RTX is working. I'll just weather the storm with the high dose pred and they will test B cell levels in 60 days or so.


    Can't say how great it is to have a group like this to ping ideas/concerns. My goal is to one day be the grizzled veteran around here calming the newbies.


    All the best to everyone!!
    B cells as an indication is not allways valid. My wg dr. Says to look at the symptoms more then the blood tests.
    You will feel the improvement step by step, gradually. Then after about 6 months, if you will need a second Rtx Iv dont look at the B cells to decide if it is time. Look at your symptoms. My wg dr. Says that one can flare while his B cells are zero.
    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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