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Thread: Anyone on cellcept with an infection?

  1. #11
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    Yes, Kidney involvement was diagnosed by rapidly deteriorating function and kidney biopsy. I commenced cyclophosphamide IV x 6 months. Also had Solumedrol x 3 days before the cyclophosphamide. At the end of the 6 months my function was around 40GFR. It gradually improved over the next year and has remained fairly stable at around 58 GFR for the past 5 years. I have been on Mofetil for 6 years so yes, it has kept me in remission. I commented on your other post. I really dont understand why they have not tried this protocol with your mum especially since she has not responded to the Rituximab. I was told about how toxic cyclophosphamide was but it was explained to me that to save my kidneys they had no option. I dont think Cellcept will get her into remission with kidney involvement. It can maintain remission but you need the big guns to get her there.

    Rose
    Last edited by Rose; 10-18-2014 at 06:36 AM.

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    Quote Originally Posted by Rose View Post
    Yes, Kidney involvement was diagnosed by rapidly deteriorating function and kidney biopsy. I commenced cyclophosphamide IV x 6 months. Also had Solumedrol x 3 days before the cyclophosphamide. At the end of the 6 months my function was around 40GFR. It gradually improved over the next year and has remained fairly stable at around 58 GFR for the past 5 years. I have been on Mofetil for 6 years so yes, it has kept me in remission. I commented on your other post. I really dont understand why they have not tried this protocol with your mum especially since she has not responded to the Rituximab. I was told about how toxic cyclophosphamide was but it was explained to me that to save my kidneys they had no option. I dont think Cellcept will get her into remission with kidney involvement. It can maintain remission but you need the big guns to get her there.

    Rose
    I thought the mofetil would help since the rtx is already in her system.
    I will have to ask her neph to see if she would qualify.
    Thanks.

  3. #13
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    I have been on Cellcept since late 2012, 2000mg per day. I'm not in remission yet and I've had MTX, Imuran, CTX and 4 rounds of RTX, I also take 15mg preds per day and Batrium MWF. I also have COPD which is a complication. I seem to get my fair share of infections and usually have to take antibiotics and go off the Cellcept until the infection goes away. My Doc is going to try to just get me to doing RTX every six months. My WBC is always high, some caused by the preds. I really believe if the doc had put me on the CTX to begin with I would have been in remission by now. I wish you all the best for getting your Mother feeling better soon.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Quote Originally Posted by Jaha View Post
    I have been on Cellcept since late 2012, 2000mg per day. I'm not in remission yet and I've had MTX, Imuran, CTX and 4 rounds of RTX, I also take 15mg preds per day and Batrium MWF. I also have COPD which is a complication. I seem to get my fair share of infections and usually have to take antibiotics and go off the Cellcept until the infection goes away. My Doc is going to try to just get me to doing RTX every six months. My WBC is always high, some caused by the preds. I really believe if the doc had put me on the CTX to begin with I would have been in remission by now. I wish you all the best for getting your Mother feeling better soon.
    Hi Jana,
    I am beginning to think that cytoxan should be used first for about 3 months and then, use an immunosuppressant if in CR or rituxan if not in remission.
    ctx works faster and rtx seems to augement if ctx doesn't do it after 3 months.
    I am not sold on the rtx only model.
    I am really sorry that u have to deal with COPD ontop of this disease.

    How long were u on cytoxan?
    Last edited by mrtmeo; 10-20-2014 at 12:33 PM.

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    I agree that CTX should be the induction med, when a organ is involved. I really feel That I would have gone into remission if I had been given it 1st, avoiding then all the preds. I was on an oral dose of CTX for 6mos., only to find out later that the dose I was given was to low. The doc a Wegs specialist said to me oh I meant to have you on higher dose, but we can't ever take that again you know. My COPD is stabilized right now, so that at least is looking good. I hope your Mom improves soon.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  6. #16
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    Quote Originally Posted by Jaha View Post
    I agree that CTX should be the induction med, when a organ is involved. I really feel That I would have gone into remission if I had been given it 1st, avoiding then all the preds. I was on an oral dose of CTX for 6mos., only to find out later that the dose I was given was to low. The doc a Wegs specialist said to me oh I meant to have you on higher dose, but we can't ever take that again you know. My COPD is stabilized right now, so that at least is looking good. I hope your Mom improves soon.
    Hi Jana,
    What drug did they give u for induction of remission?
    How much ctx per day were u taking?

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    They started me on MTX and 60 mgs preds. I think she had me on 40mg per day maybe, and it should have been 60mg, I might be wrong about dose, but I know she meant to have me on a larger dose and messed up on the rx.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Quote Originally Posted by Rose View Post
    Yes, Kidney involvement was diagnosed by rapidly deteriorating function and kidney biopsy. I commenced cyclophosphamide IV x 6 months. Also had Solumedrol x 3 days before the cyclophosphamide. At the end of the 6 months my function was around 40GFR. It gradually improved over the next year and has remained fairly stable at around 58 GFR for the past 5 years. I have been on Mofetil for 6 years so yes, it has kept me in remission. I commented on your other post. I really dont understand why they have not tried this protocol with your mum especially since she has not responded to the Rituximab. I was told about how toxic cyclophosphamide was but it was explained to me that to save my kidneys they had no option. I dont think Cellcept will get her into remission with kidney involvement. It can maintain remission but you need the big guns to get her there.

    Rose
    Hi Rose,
    When u went on the mofetil, did it make your kidney function worse before getting better?
    The mofetil is making my mom's creatinine worse and her anemia worse due to the bone marrow suppression.
    However, the blood in her urine seemed to stop.

  9. #19
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    Quote Originally Posted by mrtmeo View Post
    Hi Rose,
    When u went on the mofetil, did it make your kidney function worse before getting better?
    The mofetil is making my mom's creatinine worse and her anemia worse due to the bone marrow suppression.
    However, the blood in her urine seemed to stop.
    r

    No. Following the IV cyclophosphamide my kidney function was around 40GFR. This improved over the next year or so to around 58GFR. I started the Cellcept about 2 months after finishing with the cyclophosphamide.

    How long has she been on the Cellcept? It does take a few weeks to kick in.

    Rose

  10. #20
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    Quote Originally Posted by Jaha View Post
    They started me on MTX and 60 mgs preds. I think she had me on 40mg per day maybe, and it should have been 60mg, I might be wrong about dose, but I know she meant to have me on a larger dose and messed up on the rx.
    For my mom, they used approx 1mg/kg of prednisone.
    He wanted her on less due to her age.

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