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Thread: GI upset and Immune suppressants

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    Default GI upset and Immune suppressants

    Incase anyone else ever has this problem, I thought I would put it out there.

    My mom got very nauseous and threw up on both Mofetil and Imuran.
    Both times I had cut back her proton pump inhibitor from 2 per day to one (GI dr recommended reduction).
    I put her back on 2 per day and restarted Mofetil without any GI problems, other than a short term constipation.
    I found this out the hard way.

    I just talked to a new Rheumatologist (who consults with Carol Langford) and he said that people need to be on the ppi's when ever they are on prednisone and especially, immune suppressants like Mofetil.
    Rarely, some people don't need them.
    I don't know why my Nephrologist didn't know this and pisses me off that all this fooling around without immune suppression could cost my mom her kidneys.

    PPI's should be the standard protocol prophylaxis.

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    Blake, I've heard of others on here whose docs didn't prescribe PPI's or any kind of acid reducers while they were on prednisone. Mine is one of them. I even mentioned it and he didn't think it was important, and left it up to me to find something OTC that works. I have ended up using ranitidine, the generic for Zantac, when I have problems, and it works OK for me. But I don't blame you for being pissed off. I am, too. Why wouldn't a doc be willing to prescribe something like that, instead of leaving a patient to fend for themselves? Or else he didn't know it was a problem, which is also not a great excuse.

    Anyway, I'm glad to hear you and your mom are seeing a rheumy who consults with Carol Langford. That sounds like a very good development in her treatment, and I hope to hear some more encouraging news.
    Anne, dx'ed April 2011

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    Thanks Anne.
    Yes, I agree to, at least, give the option to the patient incase they have an issue with a life saving drug.

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    Quote Originally Posted by mrtmeo View Post
    Thanks Anne.
    Yes, I agree to, at least, give the option to the patient incase they have an issue with a life saving drug.
    In my case, I hadn't heard that immunosuppressants could be hard on the stomach the same way pred is, but I wouldn't doubt it, since your new rheumy said so. In my case it wasn't a life-saving thing, but I would like to save my stomach lining if at all possible.

    If I understand you right, you said your mom went off some of the immunosuppressants because they were so hard on her stomach, and thus she was in danger, not being immunosuppressed, when it should have been clarified that she would need a PPI while on those meds.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    In my case, I hadn't heard that immunosuppressants could be hard on the stomach the same way pred is, but I wouldn't doubt it, since your new rheumy said so. In my case it wasn't a life-saving thing, but I would like to save my stomach lining if at all possible.

    If I understand you right, you said your mom went off some of the immunosuppressants because they were so hard on her stomach, and thus she was in danger, not being immunosuppressed, when it should have been clarified that she would need a PPI while on those meds.
    Yes, that is correct.
    She could have been on an immune suppressant all the time after the Rtx and helping her disease, but no one said anything about the PPI's.
    I talked with a different Nephrologist that claimed he never got her records when I had the hospital fax them to the number his office gave me.
    Then he proceeded to say that she probably doesn't have an ulcer anymore.
    How can he even make a comment like that when he had not seen her records and the fact that vasculitis can cause ulcers?

    She has barrett's esophagus (probaby due to having her gallbladder removed) and she needs to be on the ppi's, but no one said this because medicare won't pay for them unless a dr gives specific forms.
    I finally found a new primary to give the forms to the pharmacy but this took months.

    If you don't need a ppi, don't take them because they can cause rebound acid.
    Suppressing the stomach acid for too long causes the body to compensate by making even more acid and when u stop, your acid is much higher than originally.
    I don't know if this is the case with H2 inhibitors, such as Zantac or not.

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    I just want to update that my mom has been on 1gm mofetil for 16 days and threw up.
    It looks like she will have to try the lower dose 750mg to see if this is ok.
    It must have something to do with taking an immune suppressant on top of rituxan treatment.
    I really can't believe with all those people out there taking imuran or mofetil don't have any problems, but I don't know of anyone taking them during the 6 months rituxan is working.
    This maybe why they didn't use a maintenance drug for the RAVE trial with Rituximab.

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    I'm sorry Blake.

    This is so crazy the way your mum is always affected differently from most others

    I hope the lower dose helps
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by mishb View Post
    I'm sorry Blake.

    This is so crazy the way your mum is always affected differently from most others

    I hope the lower dose helps
    Thanks Michelle!

    It sure is discouraging to see and hear so many success cases and watch my mom not respond.
    So far she has not been sick since lowering the dose.
    It could be some kind of interaction between rituxan because I can never find any cases in the literature where they use a maintenance drug with rtx.
    I just don't understand why everyone seems to respond so well to rtx, but I am probably only hearing from those that are doing well.

    My fear is that she wouldn't be able to tolerate the drugs needed with a kidney transplant and/or she doesn't go into remission to get a transplant.

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