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Thread: Lost all patience

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    Default Lost all patience

    I finally, lost my patience with this non response of MPA by the drugs my mom has taken.
    She had the best response with an IV Cytoxan one week dose on her kidney function in June 12, 2014.
    Her Creatinine went from 3.3 to 1.9 by the end of the 2nd week.
    Then, she went on Rituxan (June 24, 2014) and the best her creatinine went to is 1.8.
    She has been on mofetil at a dose of 750mg-1gm which is the suggested range and she doesn't tolerate the 1gm dose daily and she still has high inflammaiton factors and pos ANCA.

    Sed rate 35 (normal range 0-20)
    C-rp <.5 (normal range 0-.8)
    RF 28 (normal range 1-10)
    Creatinine 1.8 (normal range .6-1.3)

    By now, her creatinine should be showing some improvement.
    I found out that in Israel, they don't use Rituxan for MPA because it doesn't work for MPA.
    Both my mom's Nephrologist and Rheumatologist was surprised that my mom had little improvement with Rituxan.
    I have, yet to find anyone that has MPA and renal failure have success with Rituxan.

    She has lung involvement and unconfirmed GI involvement, so I think the cytoxan could put this disease in remission and Mofetil could maintain after. I don't know why Cytoxan was not tried much earlier, but she is almost 8 months from her first treatment with little response on a life threatening organ.

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    Cytoxin is very toxic for long term use, comes with the threat of bladder cancer. The old risk reward thing. Most of us that have taken CTX drank a ton of water to move things along, especially to go at night and not let the drug rest in us. I took mine in the AM and still drank water up to bedtime to ensure movement. It is not recommended for use longer than six months though some here have been on longer. I was on for 10 months. I would definitely ask the Docs about it, maybe they thought they hit it hard enough the first time with the IV. Hope things get better for you and your Mother.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Quote Originally Posted by renidrag View Post
    Cytoxin is very toxic for long term use, comes with the threat of bladder cancer. The old risk reward thing. Most of us that have taken CTX drank a ton of water to move things along, especially to go at night and not let the drug rest in us. I took mine in the AM and still drank water up to bedtime to ensure movement. It is not recommended for use longer than six months though some here have been on longer. I was on for 10 months. I would definitely ask the Docs about it, maybe they thought they hit it hard enough the first time with the IV. Hope things get better for you and your Mother.
    Dale
    Hi Dale,
    My mom had only a small dose of Cytoxan 750mg to last a week and then, she had to wait another week to take the rituxan.
    I would think it would only take a month or two on low dose oral cytoxan to get into remission.

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    I was on cytoxan (100-150 mg/day) for 16 months. I echo Dale's thoughts on hydration. Before I got sick, I had never had a UTI. Had an episode of visible hematuria. Bumped bactrim up to daily dose from 3x/week. Cystoscopy a few weeks later showed no anomalies, and the infection cleared ok. Changed from cytoxan to methotrexate a few months later. Been on mtx and bactrim 3x/week for 2.5 years with no major problems.
    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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    I like the idea of lots of water starting in the AM until bedtime to flush the cytoxan out.
    I will definitely use cranberry extract too to help the bladder, but I wouldn't want her on it more than 2-3 months max.

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    Quote Originally Posted by mrtmeo View Post
    I like the idea of lots of water starting in the AM until bedtime to flush the cytoxan out.
    I will definitely use cranberry extract too to help the bladder, but I wouldn't want her on it more than 2-3 months max.
    I don't like just plain water, so I always put about an ounce of cranberry juice in my water. I buy a store brand (Giant Eagle) that has no added sugar. Been doing this since we moved to Columbus 4+ years ago...
    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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    I was on oral CTX, 100mg/day, longer than I should have been, I guess about a year. It helped me a lot, though, and I think I could have switched at around 6 months if not sooner. Only time would tell how your mom would respond to a steady dose of it over 2-3 months or more. I can understand why you want to try it, and wonder what your new rheumy would say about it. I remember her nephrologist thought her body was too fragile for it. But I wonder if all docs, including the rheumy, would agree with that.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I was on oral CTX, 100mg/day, longer than I should have been, I guess about a year. It helped me a lot, though, and I think I could have switched at around 6 months if not sooner. Only time would tell how your mom would respond to a steady dose of it over 2-3 months or more. I can understand why you want to try it, and wonder what your new rheumy would say about it. I remember her nephrologist thought her body was too fragile for it. But I wonder if all docs, including the rheumy, would agree with that.
    Hi Anne,
    When I mentioned cytoxan to her rheumy, to my surprise he said it was too strong but when I asked about another round of rtx, he said sure.
    When I asked her nephrologist this week about ctx, he said we could do it if things don't improve, but to save for when she really needs it.
    I thought this thru very carefully and with the help of the wonderful, knowledgeable folks here, I think she needs to do the ctx.
    If there wasn't this organ threatening issue, I could wait for the mofetil, but it has been 4 months on it with no remission.
    Cytoxan works faster and that is why it is the first line drug used.
    If her neph doesn't think she should use ctx, I will find someone else who will, if by the next blood work there is no improvement.

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    Your mom doesn't sound like a woman who would weigh very much, although I could be wrong.... so would need a lesser dose of CTX than some. However, it is all relative, as the dose is based on weight, so to her, it would be the same as a heavier person on a higher dose. In my case, I really should have been on 125mg according to the ratio I'd seen on the top WG sites. But the doc started me on 50mg for a week or more, I forget how long, along with pred, to get me acclimated to the drug. Then he wanted to go to 75mg. but I insisted on at least 100mg., having read the forum and done the research, and wanting to get on with it. I stayed on 100mg., except for a short spell on 125mg. when a weird symptom cropped up. Then back to 100mg, and I did well, though I wonder if it would have been faster at 125mg. Anyway, with your mom as sick as she is and no progress being made, I agree with you that it could be a chance worth taking. If her kidneys could improve by going this route, she would have a chance of a more normal life again, as would you. Otherwise, the way things are going, it does seem like there isn't a lot of hope. However, as many have said, RTX takes more than one round for some, so that could be the case here. Or, as we were conjecturing before, both CTX and RTX, not necessarily at the same time, since I'm not sure if that's done. I know that RTX and MTX are sometimes done concurrently, as testified to by some of our members.
    Anne, dx'ed April 2011

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    My mom usually weighs around 107 lbs, but she looks like she weighs 89 lbs.
    I don't know why she weighs more than she looks.
    Most of the stories I have heard of weg's folks not responding to the ctx, they switched to rtx after 3 months and had good improvements.
    I heard that rtx is not used in Israel for MPA because it doesn't work for induction for MPA.
    It probably works for those that are non responsive to ctx.
    The best results of those with MPA that I have seen is ctx and then, imuran.

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