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Thread: Rituxan - didn't work well for MPA

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    Quote Originally Posted by annekat View Post
    I go more by what I read here on the forum than by "literature", since I know the latter can be all over the place, depending on where you read, can be based on studies which may not represent an accurate cross section of the WG population, and can be overly alarmist. My sense is not that people with light involvement who flare will "usually" end up with lung or kidney problems at the 2-3 year mark. Some will. Many, or I would say most, will not. Or if they do, it may take a lot longer than 2-3 years. Everyone's case is different. If most "mild" WG sufferers did follow this scenario, I think we'd hearing about it a lot more than we have. This is not to overlook the unpredictability of WG or to hide from the fact that anything can happen at any time.
    I didn't mean that everyone who flares will end up with kidney failure, but that those who have the kidneys become involved usually end up with failure starting at the 2-3 year mark.
    I can't find the study that states this right now, but will post it when I find it.
    My mom's kidneys started to fail at the 3.5 year mark.

    The whole point here is for people with vasculitis to be on their guard at this time frame to keep an eye on kidney function.
    Once we lose are kidneys, dialysis is not a great option, but if we can prevent kidney failure, this is the point.
    Last edited by mrtmeo; 10-22-2014 at 09:45 AM.

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    Quote Originally Posted by mrtmeo View Post
    I didn't mean that everyone who flares will end up with kidney failure, but that those who have the kidneys become involved usually end up with failure starting at the 2-3 year mark.
    I can't find the study that states this right now, but will post it when I find it.
    My mom's kidneys started to fail at the 3.5 year mark.

    The whole point here is for people with vasculitis to be on their guard at this time frame to keep an eye on kidney function.
    Once we lose are kidneys, dialysis is not a great option, but if we can prevent kidney failure, this is the point.
    OK, I get it now, and I think maybe you posted the study before. I'm at the 3.5 year mark from beginning of treatment, though I'm at the 5 year mark for actual Wegs involvement including the undiagnosed time. So, yes, this is important to keep in mind. But I'd revise the statement not to say that this group "usually ends up with failure", since if it is caught early enough and treated, kidney failure will most likely not happen. True, if we do not monitor our kidneys and they become involved, it can happen fast, and without the additional needed treatment, we may be quite likely to experience kidney failure and be candidates for dialysis or transplants. Your point is well taken. And it sounds like your mom has needed more aggressive treatment for her kidneys for quite a long time. Which I guess we already knew from reading your posts. I'm so sorry that issue doesn't seem to be getting resolved, and wish her the best for a turnaround.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    OK, I get it now, and I think maybe you posted the study before. I'm at the 3.5 year mark from beginning of treatment, though I'm at the 5 year mark for actual Wegs involvement including the undiagnosed time. So, yes, this is important to keep in mind. But I'd revise the statement not to say that this group "usually ends up with failure", since if it is caught early enough and treated, kidney failure will most likely not happen. True, if we do not monitor our kidneys and they become involved, it can happen fast, and without the additional needed treatment, we may be quite likely to experience kidney failure and be candidates for dialysis or transplants. Your point is well taken. And it sounds like your mom has needed more aggressive treatment for her kidneys for quite a long time. Which I guess we already knew from reading your posts. I'm so sorry that issue doesn't seem to be getting resolved, and wish her the best for a turnaround.
    Hi Anne,
    I will revise my comment, so others don't get the wrong impression.
    Thanks for your concern for my mom.
    I wish I would of known about the RPGN earlier.
    Last edited by mrtmeo; 10-22-2014 at 11:14 AM.

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    Quote Originally Posted by mrtmeo View Post
    Hi Anne,
    I will revise my comment, so others don't get the wrong impression.
    Thanks for your concern for my mom.
    I wish I would of known about the RPGN earlier.
    It's OK. It's just a matter of semantics. I was seeing "kidney failure" as meaning really far gone, while you may have been seeing it as including earlier signs of the kidneys starting to fail. I'm probably being too picky. Now I'm having trouble remembering what RPGN is.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    It's OK. It's just a matter of semantics. I was seeing "kidney failure" as meaning really far gone, while you may have been seeing it as including earlier signs of the kidneys starting to fail. I'm probably being too picky. Now I'm having trouble remembering what RPGN is.
    Hi Anne,
    Many go into end stage renal failure at time of diagnosis and after treatment regain their kidney function to near normal or normal.
    There is a young guy on the vasculitis stories that had a creatinine of 9 at its worst and settled at 1.2 after treatment.
    RPGN = Rapidly Progressive Glomerulonephritis.
    My mom has pauci-immune crescentric rapidly progressive glomerulonephritis.
    At her worst, her creatinine was 3.3 and at its best was 1.8 but her nephrologist was convinced hers would have went below 1.5.
    I am praying it still improves, but it hasn't and her disease is not in remission, yet.

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    Yes, I'm aware from some of those on here that people can have really bad kidney failure and overcome it. It is quite scary, though. I'm glad your mom's creatinine hasn't been near the "end stage" level but hope you can get some more acceptable numbers before long. The RPGN stuff is over my head and I don't have the time or energy to delve into it at this point. "Rapidly progressing" does sound a bit scary, though. I wonder if she is in the hands of the best and most experienced vasculitis/MPA docs she can get.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Yes, I'm aware from some of those on here that people can have really bad kidney failure and overcome it. It is quite scary, though. I'm glad your mom's creatinine hasn't been near the "end stage" level but hope you can get some more acceptable numbers before long. The RPGN stuff is over my head and I don't have the time or energy to delve into it at this point. "Rapidly progressing" does sound a bit scary, though. I wonder if she is in the hands of the best and most experienced vasculitis/MPA docs she can get.
    Her nephrologist has been dealing with vasculitis patients for 30+ years, but I don't know how many he has treated.
    I have to ask him.
    The local vasculitis chapter leader never heard of him, so not sure that he is well versed in it, but it's all we have for now.
    Transferring records becomes a difficult battle and her case is so complicated.
    Her neph is definately, knowledgeable in so many areas of drugs and drug interactions, plus he is the most accurate with her records than any other dr she has ever seen.
    He is much more knowledgeable than a rheumatologist we saw last year.

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    Well, I'm not one to talk, since I don't see anyone with a lot of experience. The doc you have for your mom sounds OK and I'm sure knows who to consult with if he feels the need.
    Anne, dx'ed April 2011

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    I agree that it sounds like a good idea to be on the lookout for kidney issues for wegs who are in remission, its so easy to not notice anything even though there would be a problem with the kidneys. I didn't experience any symptoms, and I guess I was just lucky that I got my blood and urine tested this summer as it apperars the symptom I had wasn't even weg's related and still I was hospitalised a week after the results.

    I posted a link to an article where a doc recommended wegs patients to use these dip sticks to measure their urine. I did ask a rheumy and my neph about it, but they weren't convinced its a great idea since those tests aren't too reliable. For me I guess they will do regular urine tests now, and besides with blood and protein in my urine those sticks would be positive for me. But I guess for wegs whose kidneys are working fine it might be good to check monthly and then ask for lab tests if the sticks show positive results.

    Quote Originally Posted by mrtmeo View Post
    How many months were u on the cytoxan?
    I still am, guess its going to be my fifth infusion next week. They were talking about 6-10 infusions when I was hospitalized, but the latest I heard it would be 6-8 and then a switch to Aza.

    How come your mom has such low pred dose? 8mg sounds very low. If she was DX'd in June I take it she has been on pred for less than 5 months.. When I relapsed in July I first got 1g IV's for three days and 80mg pred, which was slowly tapered so that I'm now on 30mg. Guess I will be on 10mg in december, but they wrote that they are using a faster tapering as I've responded well to the treatments, so just curious why your mom seems to be tapered fast even though it didn't sound like the other meds were helping her that much. Last year I was dx'd in August and I think I was still taking 10mg in May even though I felt great. Great if she doesn't need to take much, but just wondering as it sounds like a very low dose.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Quote Originally Posted by mrtmeo View Post
    Hi
    My mom has pauci-immune crescentric rapidly progressive glomerulonephritis.
    I have/had same kidney biopsy result

    Rose

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