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Thread: Confused with pANCA test and doc recommendations

  1. #31
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    Quote Originally Posted by lovetoswim View Post
    My cousin passed along my "story" to her U of Penn gastro guy. he doesn't udnerstand why the doc who ran the blood work and dx'd me with possible Wegs didn't give me a lung doctor referral for the biopsy. I've hit brick walls at every turn. OTOH, this gastro doc claims pANCA can be high when there's infection going on. Is that possible? I have been quite ill over the last 12-18 months, but other than a lot of mucus, I've been working out like a stallion every day and feel really good. Could I still have Wegs?
    I wonder if that doc meant inflammatory markers such as SED rate and CRAP can be high when there is an infection. I think ANCA is more specific to certain forms of vasculitis, including WG. I could be wrong.

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    Anne, dx'ed April 2011

  2. #32
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    Quote Originally Posted by lovetoswim View Post
    Hi, Annekat, I will pm you. Thanks so much for all your help. There is a nodule on my chest scan, as well as some "patchy infiltrates" whatever that is.
    How is your "quality of life" on methotrexate?
    I will look for your PM. I don't know much about the various manifestations of WG in the lungs, just that mine were cavitary lesions, and now they say there is a benign nodule which likely grew out of one of these lesions, which they think is filled with fluid and air, and harmless. But a good reason to find a new pulmy, just in case, since mine retired. As for methotrexate, I usually feel ok on it and it hasn't caused any liver issues in my blood work. I did feel yucky on it at first, and for awhile, the day I took it, and that can still happen if I'm run down or low on sleep. It helps to split the dose, like take half at night and half the next day.

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    Anne, dx'ed April 2011

  3. #33
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    MTX is pretty widely prescribed and well tolerated by many. It is effective in inducing remission of GPA for a lot of patients and is not expensive. It's also used by a lot of RA patients. I've been taking it for over three years with no side effects other than occasional mild nausea the day after using it (I take mine via injection once weekly) and minor elevation of liver enzymes shown in labs once in a while.

    It seems from what you've said though that you have not been definitively diagnosed, and it's confusing to me that you say you have been very ill but that you feel great. Sounds like you have something chronic and/or recurring that is mysterious, and that GPA has only been raised as a possibility?

  4. #34
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    Yes, Alaskatom, I do feel really strong now - finally all the mucus (the last surviving symptom) is gone. But, it's been a year and a half of dozens of visits to ENTs, at least 6 prescripts for antibiotics and 5 pack prednisone. The worst was in December when I got pneumonia, then the flu and a sinus infection that my ENT described as "raging." He did a culture and 4 bacteria were found. My primary recommended an immune doc. I had b/w done that showed high pANCA and Lymph node readings. That doc thought it was Wegerens and told me to get a lung biopsy. I don't even know if the proper tests were run. And from the research I've done on line, I can't find anything other than vasculitis as a cause of high pANCA. Do you know if pANCA could be high as a result of an infection?

  5. #35
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    Hello. If I understand you correctly, you haven't been diagnosed yet. If it turns out that you have WG, it is something that you can live with. My husband has had it for twelve years now. He goes to the gym every day - he does cardio and weight training. So, please don't think that you're life will go downhill from here. Once you get your team together and get on the right meds, you may find that you will be able to live your life and do it well. Best of luck to you!

    Sent from my SAMSUNG-SM-G935A using Tapatalk

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  7. #36
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    I would highly suggest seeing a Rheumatologist first. They will be your go to doc and help your coordinate any biopsies/treatments that you need. A Rheumatologist should see you with out a diagnosis, and will probably want to run a battery of other blood tests and such to get a feel for where your at. As for the sinus surgery - there should be no reason for you to have the sinus surgery as well as a biopsy. I got talked into a sinus surgery at one point (when I was not under proper care by a Rheumatologist) and it didn't help at all with my chronic sinus infections. A Rheumatologist that knows about WG can help you negotiate that though.

    As for all of the meds - yes they can seem a little scary, but they are important in keeping you healthy. But what you will end up taking, all depends on how the disease is effecting your body. If all you have is sinus involvement, they may try treating you with only low doses of prednisone. This will help with the sinus infections, and usually helps me a ton with my fatigue. At low doses you may notice some minor side effects, but it's really not bad. The other types of drugs may be needed if the disease is more advanced (which it doesn't sound like it is), but even if they are needed, the side effects are usually minimal.

    You can still lead a normal life, and exercise as much as you feel able to. Exercise is good for you no matter what, and my doc encourages me to do as much of it as I can without exhausting myself or irritating my joint pain too much.

    Stay calm, and find a good doc that can help you through all of this. I wish you the best of luck!

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