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Thread: Just had my Immunologist appointment

  1. #11
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    Hi Andrew,
    Hope everything turns out well for you.
    I had check-up last week and am now down to 5mg Prednisone and not sure if I'll get to stay on Imuran. I've been on 100mg since April but my last blood work showed TPMT level was low at 10.7. Does anyone know anything about that? It was a new test that I'm not familiar with. I've been seeing two Dr.s which may be a problem because there are some conflicts between them.
    It's like two cooks using the same pot and we all know what that can do.
    ha,ha.....not a good thing
    A cat scan of my lung showed no nodules and the only scarring was where I had biopsy, so I was happy about that.
    I'm having more blood work done to be sure about this TPMT. I guess it tells you about the liver and whether it is being poisoned or not but I don't know what the normal numbers are. If anyone knows, please let me know.
    Thanks! Sincerely, Terri

  2. #12
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    From what I read, TPMT seems a bit like shutting the gate after the horse has bolted. It could however be just checking how you're going on the Imuran.

    See: Thiopurine methyltransferase - Wikipedia, the free encyclopedia

    And for a less 'wordy' description: TPMT: At a Glance
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  3. #13
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    Mission, BC, Canada
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    Default lungs

    Hi, I just had an xray which showed lesions so off to pulmonologist I go. My rheumy refused to get me back to cyclo ( 4 weeks ago I finished 6 months therapy) until I know whats in my lungs - I would have thought that it was simple - the granulomas are there - duh. I am a bit scared as I am spitting up clood clots and there is moderate blood in urine. I've had WG for almost 2 years but had no lung or kidney involvment so I am a bit scared and wish that the docs put me back on cylo or start meta ASAP. Any thoughts. My anca is high over 200, crp about 9 but everything else seems ok. Thanks Andrew for getting this group together it is so helpful and encouraging to hear eacho thers stories. Gratefuly
    Jolanta
    Jolanta

  4. #14
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    How are you doing? Has the doc come back with a course of treatment yet?

    I haven't had this happen to me but it sure would be scary.

    Keep us updated.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  5. #15
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    Featherston, Wairarapa, NZ
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    Hi Andrew
    I havent been on site for a while, hope things are better for you. Like you I was running our of air and went on like this for a year, the last couple of months were the worse. Eventually having to have a tracheotomy. My lungs as far as I know from my last CT scan are fine, my blood pressure was always excellent but just couldnt breath. I used to complain to the doctor on his rounds when I was having my IV cyclo but by the time he came round to see me I had been lying on a bed for 4 hours with my IV so I think he must have thought I was over exagerating. I was always seen by an intern prior to being pluged in, who would ask me the same questions every month but they never seemed to be worried about the breathing. I used to wish they would walk with me up the corridor to see just how bad I was. Im not copeing with the trachey very well, I hate it, so hope things dont progress as badly for you. If anyone else has a trachey Id love to hear if there have any tips on making it better. Presently I cough consantly and have to clean the tube around 20 to 30 times a day, depending on how physical I am. It doesnt take much just a quick step from the car to the office and I have to clean it. Sleeping, lying down siting in some positions are all difficult and have to be done cautiously as it can get knocked and starts bleeding which means more cleaning. Its been 2 months now and I keep thinking its got to get better as I have another 10 months at least!!!!
    Sorry for being such a moaner today. I know there are a lot of people worse off than me, but sometimes you just need to be able to moan about it to someone who knows what its like. I guess I put a brave face on to friends as I know having someone moaning and complaining all the time can bring others down so I tend to keep it all bottled up.

    Regards
    Trish

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