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Thread: Intro, not so much newbie.

  1. #1
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    Default Intro, not so much newbie.

    Hi,
    I'm here to contribute and foremost find others to commiserate, educate and postulate of our status of AnCa Vasculitis and the lot.
    Here today I have recently finished nine mo of Cytoxan and pred protocol for p-Anca Wegs which 'twas manifesting in lungs bilateral w lesions and ground glass on CT images. My kidneys were in on the active and destructive front; those failed me at last re-admission following unsuccessful pneumonia resolution and combined with kidney stones granted me a total of three hospital stays last dec 15 thru Jan 18th of 2016.
    So, after nearly four weeks under the care of our fine doctors, nurses and all at the local Baptist South Hospital I was off and running(barely hobbling-fact is of course) with a treatment plan and was more than a bit scared. I didn't require dialysis. Transfusions to remedy near-critical anemia, bronchoscopy or two were to complement the IV drips that topped off my mineral levels.
    So many of you will relate to the masked problems that occur the prior six years sending me to ENT and Neurologists. Namely, ailments of upper airway, sinus disease, joint pains, limb weakness and neuropathy in hands, feet and face . These, topped off by several recurring types of pain concurrent with freezing feet at the later times in the day that frequently prevented a good nights sleep. The blasted big toe was stabbing pain sharp and prevalent despite ibuprofen, preventing driving an automatic transmission auto just a few memorable times


    Not nearly as debilitating as all I described, my disease spectrum of course is narrow to medium width being at this early stage of using the toxic drugs, and prednisone! Only were it these were all of the possible implications out of the seemingly unending issues that plague us hit by the big bad "pretender-the hard to diagnose wegs and PRED. Thanks in advance for the .welcome to the community.


    You show valued caring like providing that of a beacon in a storm; I have already benefited of that.


    I'm hopeful to gain a grasp at an accurate, meaningful dialogue to talk simply about astute research within immune response mechanisms in a scientific way, as well.
    More importantly, plain surpassing feelings of isolation or hopelessness during living through treatment of GPA/MPA and the like. Thanks.

  2. #2
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    Welcome,
    Sounds like you're feeling somewhat better.
    I have a ton of research information that my son's doctor sent me. It's amazing to see all the studies and the results and the amount that is still unknown about this disease and it's medications.
    Be well

    Sent from my SM-G920V using Tapatalk

  3. #3
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    Hi bbkayecoop, welcome!
    Where do you get treated and what treatments are you on? I'm treated in Boston and just dx on 8/1/16. I get ritux and am on pred and I thoroughly understand your statement about hopelessness. This group has helped me feel less isolated tho. . You are not alone. And many people on here are doing really well. We have cause to hope.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  4. #4
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    Welcome to the forum! Sounds like you have a lot of experience to share. I'm glad you found us.

  5. #5
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    Welcome Bbkayecoop. It looks like you joined awhile before starting to post, which I did, too. So you already know how great this forum is, and I'm happy to hear from you. This disease is so hard to get a handle on because every case is a little different. Sounds like you are doing a good job of trying to make sense of it. I hope to hear a lot more from you!
    Anne, dx'ed April 2011

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