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Thread: New Member diagnosed in 2017

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    Default New Member diagnosed in 2017

    My GPA experience started in December 2016 when I started having night sweats every night. Not just a little night sweat. But the kind of night sweat that soaks your clothes and bed clothes. I felt bad, had no energy, and had no desire to eat. Then I developed clogged sinuses. I thought I had a nasty head cold. Then in January 2017, after almost passing out at home, the local ER diagnosed me with a PE in each lung. (I was prescribed Eliquis.) Why would that have happened? Up until this point in my life, I had been a healthy, active person with no heart issues. Multiple visits to multiple specialists (lung, hematology, gastroenterology, vascular) turned up nothing. I still felt bad and was losing weight, and we still didn't know what caused the PEs. Then, in March 2017, I went to the ER for something totally unrelated, and bloodwork that was done revealed that my kidneys were failing. The nephrologist at the hospital suggested an ANCA test, and I was then diagnosed with GPA. A kidney biopsy confirmed it. Rituxan smacked it down, and I have been in remission for 2+ years, and now my PR3 level has started creeping up. I've been feeling good, but that has me concerned. All other labs are fine, but the PR3# is increasing slowly. I take 15mg methotrexate. Has anyone else had this happen (creeping PR3)? I'm happy to have found this forum. I don't know anyone who had ever heard of vasculitis before!

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    Default Re: New Member diagnosed in 2017

    My initial cANCA count was about 600 when first diagnosed, it’s now down to 4.7. Good enough that my blood tests are monthly now instead of weekly. Your numbers can and will vary as the treatment progresses, unfortunately Wegs is a grinning little bastard of a disease and nobody really knows what it’ll do next. Some people here are stable, some vary up and down, or may have full-blown flares from time to time. I don’t mean to scare you, but I always find calm honesty is preferable. If your specialist is any good, they’ll keep it in check, and won’t waste any time if things seem to be getting worse. Did your specialist mention anything about the increase in PR3 numbers?

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    Default Re: New Member diagnosed in 2017

    Oh yes. my mtx dose was increased in response to the rising PR3.

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    Default Re: New Member diagnosed in 2017

    Welcome Nova, glad you found us meandering thru our disease together. Great place for anecdotal and some factual ideas as you progress. Please ask any & all questions you may have. Your trip thus far seems fairly normal as to WG, lol! Not funny, I know, but one has to keep a light heart with this stuff! The MTX dosage seems a bit low. I was on 20mg for about 4 years with and w/o prednisone during which time I lost hair, weight, then was off for about 5 years until next flare. Then I was given Rituxin, and have been thru 3 doses to date, no pred, and am feeling pretty well now. Still fatigued at times, a few symptoms from time to time, but Mayo has me in pretty good shape. Keep at it, you will feel better and better, almost new again...just watch your steps from now on! Best to you!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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