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Thread: Worried WG veteran in Texas

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    Default Worried WG veteran in Texas

    Hi everyone,

    I am very glad to find this forum and read many of yourstories. My WG was diagnosed in 1998after two years of fevers, fatigue, sinus symptoms, and finally a septal perforation. It seemed like it was diagnosed pretty early,and was limited to upper respiratory. Methotrexateand Imuran did not do much for me, so I went on Cytoxan (plus prednisone andBactrim). It worked well, and after acouple of years I went into remission. Ihave been in remission for 15+ years. A rheumatologisttold me that if you are in remission for that long, that the disease isbasically gone and you can count on it being really over, which was obviously agreat idea to me.


    However, I think I am now having a flare and am prettyfreaked out about it. At first I thought it was just a bad cold…thenflu…sinus infection, etc. but it will not go away. Fever,muscle aches, fatigues, malaise, and nasal “crusties”. NormallyI walk 5+ miles a day and now walking across the room sometimes makes me shortof breath. Am having a problem with oneof my ears. Have seen a doctor a coupleof times and had several courses of antibiotics, steroids, etc. and that hasnot worked. Some days are better than others, but for themost part I’m not feeling well and not functioning well.


    I am really hoping that this is something more benign, like the world’s longest fl u, but am more and more concerned about it. I’m in my early 50s and am leery about the impact of the disease and/or treatment compared to when I was 30.

    My previous rheumatologist seems to have closed upshop. Does anyone have a recommendationfor an appropriate specialist in the San Antonio, TX area? The earliest appointment I can get for someonewho seems to know what they are doing is six weeks from now.
    Thanks for this board and the great conversations about WG.

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    Default Re: Worried WG veteran in Texas

    Quote Originally Posted by Cat P. View Post
    Hi everyone,

    I am very glad to find this forum and read many of yourstories. My WG was diagnosed in 1998after two years of fevers, fatigue, sinus symptoms, and finally a septal perforation. It seemed like it was diagnosed pretty early,and was limited to upper respiratory. Methotrexateand Imuran did not do much for me, so I went on Cytoxan (plus prednisone andBactrim). It worked well, and after acouple of years I went into remission. Ihave been in remission for 15+ years. A rheumatologisttold me that if you are in remission for that long, that the disease isbasically gone and you can count on it being really over, which was obviously agreat idea to me.


    However, I think I am now having a flare and am prettyfreaked out about it. At first I thought it was just a bad cold…thenflu…sinus infection, etc. but it will not go away. Fever,muscle aches, fatigues, malaise, and nasal “crusties”. NormallyI walk 5+ miles a day and now walking across the room sometimes makes me shortof breath. Am having a problem with oneof my ears. Have seen a doctor a coupleof times and had several courses of antibiotics, steroids, etc. and that hasnot worked. Some days are better than others, but for themost part I’m not feeling well and not functioning well.


    I am really hoping that this is something more benign, like the world’s longest fl u, but am more and more concerned about it. I’m in my early 50s and am leery about the impact of the disease and/or treatment compared to when I was 30.

    My previous rheumatologist seems to have closed upshop. Does anyone have a recommendationfor an appropriate specialist in the San Antonio, TX area? The earliest appointment I can get for someonewho seems to know what they are doing is six weeks from now.
    Thanks for this board and the great conversations about WG.
    If you are having some symptoms suggesting a flare I would seek help sooner by going to a walk in service or ER in hospital and ask for some lab work to help clarify your sitation. Six weeks can be way too late for a serious flare.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Worried WG veteran in Texas

    Hi drz, thanks for your reply!

    Yes, I agree that six weeks is a scarily long time. I'm just not sure what to ask for--the urgent care people did not know what tests to do, understandably. I was never ANCA positive and can't remember much about my lab tests beyond general bloodwork, sed rate, etc. Most of my treatment was at a major teaching hospital in another city, and I have ordered my records from there in hopes they might be helpful. Am feeling a little lost beyond that.

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    Default Re: Worried WG veteran in Texas

    Find a rheumatologist with GPA experience and show up with or without an appointment. You need to be seen the same day and put on something that will make this flare up stop right away, such as prednisone.

    The secretary has no clue as to the urgency of our situation, their objective is to spread out the appointments evenly for the next 2-3 months.

    Ed.

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    Default Re: Worried WG veteran in Texas

    It does sound like you are having a flare. It is unfortunate that you are ANCA negative. Of course this could have changed. This disease is crazy. I think Drz may have a better idea-seeking medical attention in an ER. Perhaps at a teaching facility?


    Sent from my iPhone using Tapatalk

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    Default Re: Worried WG veteran in Texas

    Thank you so much, drz, Seied, and NatriceRomeo. I went to an urgent care center and got them to prescribe a couple of weeks' worth of prednisone. That should at least be a beginning.

    Since I started worrying about having a flare I think I have been in "deer in headlights" mode and your posts helped to get me back into action. It is good to be able to chat with other WG folks. Friends and family can't share that point of view.

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    Default Re: Worried WG veteran in Texas

    Remember Folic Acid, Nexium, Vitamins B, D, Calcium, etc.
    Good luck.

    Ed.

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