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Thread: Hello from PA....

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    Default Hello from PA....

    Hello, my son was diagnoised with WG a year ago, by an accidental finding of a mass on his lung. We think he got it from his ringworm medication. Hes had UTI symptoms but has had urine tests and only to find his urine is concentrated...i dont believe that, could he be having flare up of inflamation?? Im worried...anyone have any suggestions or experience hes 11 and has been on methtraxate for the last year just about...Any info or help woukd do...thanks...

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    Hi, Leeza! Me again. It's late everywhere in the US but maybe not in Australia and the other places where we have lots of members worldwide. I'm just about to drift off, but someone will be on here for you sometime tonight, I'll bet! Although you are up really late! It's three hours earlier here. I know there are other people here from PA. Maybe you all can touch base and even meet in person. I hope you have access to some good doctors who know Wegener's. That would be especially important for someone his age, to make sure he can get through this and go on to lead a typical kid's life. I hope others can answer your questions about the concentrated urine. Maybe talk to you in the morning.
    Anne, dx'ed April 2011

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    Hi Leeza,

    It's early evening here in Australia - Anne, go to bed

    I'm sorry about your young son having WG. I'm just playing catch up with post again so I haven't seen any others that you have done yet.

    I really don't know what the concentration of urine is, but I sure hope it isn't a flare.

    Have a lovely night ladies
    Last edited by mishb; 01-26-2015 at 09:41 PM. Reason: spelling
    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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    Hi Leeza,

    Sorry to hear about your son.

    Just speculating here... Your son's concentrated urine may be a result of not drinking enough water. This may be an issue with some of the medications he may have to take as the metabolates can be hard on the bladder. Staying hydrated and more frequent urination helps with this.

    A couple of questions, if I may: Is your son being treated by a Vasculitis specialist? If you live in eastern PA, you are close to University of Pennsylvania where there are some. If you live in western PA, you may be closer to Cleveland Clinic where my rheumy treats me (and some other forum members). How was your son diagnosed? Is he on any other meds besides methotrexate?

    Hope he gets into remission soon. With proper care, he can live a near normal life. Good luck!!
    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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    He is seeing a rhuematologist whom is with allentown and hershy..im in the poconos. He was in a wrestling match , got half way knocked out, coukd not walk and went to ER.. and they took a ct scan to ck on his spinal cord and caught a glimpse of his lung and saw a mass...we went to a lung specialist who took all kinds of tests, then pediatric surgeon wanted to get it out, removed it and they did tests on it.. .About 2 weeks later tgey came up with WG...Hes had no symptoms...but maybe a few months ago ecery now and then he complains his hands hurt in the morning. He has no other meds.

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    His hands hurting is definitely a possible symptom of WG. There are so many symptoms and each of us seems to get a slightly different combo of them. It's great that, other than that, he's not having symptoms. It sounds like the mass in the lung was the only big thing so far. That bodes well, now that he's being treated, that no other permanent damage has started within the typical areas that Wegs attacks. Is he not on prednisone, as well as methotrexate? And typically, he'd be on the antibiotic Bactrim, as well, to prevent lung infections due to being immunosuppressed by the MTX. There can always be reasons for the docs to vary from the typical. But I would recommend checking out the treatment centers Pete mentions above. It is also possible for your docs to consult with those with more expertise, for free, and here is one place to start: VF Medical Consultants
    Anne, dx'ed April 2011

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    He was on predisone in the begining after tge mass for about 6 months tgen went on MTX and started weening off peedisone completely...thanks for the link...i feel like its so rara they dont know much what if they miss something or i dont know something to ask and it may be important...right now im trying to get medixmcal coverage back so i have been racking up bills and now hes due for bloodwork.. i think i can just walk in blood labs and pay or get billed...

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    Good that he was able to taper off the pred. 11 would be pretty young for being on it and not being able to get off it, as it can do a lot of damage long term. Here is another link: Vasculitis Patient Advocacy Network . It may mention some good docs in your area who are not on the VF site.
    Anne, dx'ed April 2011

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    I would think the Rheumatologist would schedule blood work for you. Poconos would be closer to Philly yes? Dr. Peter Merkel is at UPenn I think, but the link Ann gave you would let you know.
    Dale

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    I have a script i have to take him...its urine and bun creatine...some other stuff...im going tomorrow..

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