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Thread: How to know when you're having a flare

  1. #21
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    I just went to the ER today with severe face swelling and pressure. Couldnt breath through my nose and my right eye was giving me trouble too. Heavy chest no fever or mucas but the blood pressure was up 158/111 I was neverous. i gained 4 pounds while sleeping last night too. I was lightheaded and very tired. Swellingin arms and legs too. Not bad but uncomfortable. They called the RA and put me on a zpack with afrin and pain meds. After the chest xray and labs came back good. They asked what they could do I said check my kidney function pleaseeeeeeeeeeeeeeeeeee. So off to the lab with the tube. Came back okay. I thought I was falling. i see The RA wednesday and the pulm doc friday. hope they are right about sinusitious.

  2. #22
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    It sounds like sinusitis, Onatreetop. At least I hope it is rather than a flare. I hope you get feeling better soon and have a good RA that knows WG. Do you have a good ENT and Nephrologist?

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  4. #23
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    Just the Ra and prim. I need to look for the ENT next. Have a first appointment with pulm doc friday. I hope the z pack works.

  5. #24
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    In my personal opinion the z-pak is not a very powerful antibiotic. So if you don't get better you might need a stronger one. Or it could be a Wegeners flare too. Did they check your heart? Congested heart?? Sorry, just my blood is boiling. Like, Jack said you probably need a low dose of lasix to get rid of some of the fluid. Just so sorry your going thur this... I am here if you need me.

  6. #25
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    I really question a diagnosis of sinusitis. That doesn't explain fluid retention, heavy chest, wt gain or high bp. Please call one of your regular docs today.

    In my experience, ER docs are not that skilled at diagnosing. They tend to look at a small group of symptoms and jump on them with a drug. That's probably sufficient for the majority of patients in an ER, but not for Weggies. ER docs' job is to rule out immediately life-threatening issues and get you out of there. You need a thorough evaluation, Onatreetop, and the diagnosis should explain your symptoms.

  7. #26
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    Sangye, You're right. It cant be just sinusitis. And You're right about the ER docs as well. Only a good Wegs Specialist can give a proper and thorough evaluation of us Weggies.

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  9. #27
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    Hi, recently I have met 1 clinic doc and 1 hospital doc that knew what I was talking about when I told WG. To me that sounds like a big step forward. Once they learn to diagnose with a simple test, we will have an "epidemic" me thinks.

  10. #28
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    In any physician training (medical, chiropractic, naturopath, etc...) you must learn about every disease. What I learned about Wegs was the same as what most MDs I've talked to learned :
    "Very rare autoimmune disease, lungs/kidneys, high mortality, will likely never see a patient with it."

    Most of the doctors I've encountered (ER, regular, etc...) have heard of Wegs and many knew this summary description of it. Regular rheumy and pulmys knew how to diagnose it. None but the Wegs specialists have any idea of how to treat it properly. That still leaves a lot of Weggies undiagnosed and/or untreated.
    Last edited by Sangye; 01-07-2010 at 01:40 AM.

  11. #29
    Doug Guest

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    I was fortuinate in that the pulmonologist who took over my treatment actually had experience with WG patients, but, more importantly, is a very conservative doctor who regularly- and still- consults with the University of Colorado rheumatology department head who is the true expert on WG.

    One thing I found impressive along the way was how the nurses, on learning I had a rare disease, actually Googled for more information on the disease, mostly for their own knowledge, but also so they could share print-outs with me. That added information helped me when I tried to explain to my family back in Nebraska what I had and what the doctors were doing to help me. There were many excellent doctors involved in my care, but there were many more nurses involved in may care who also were part of my support group. Hurray for nurses!
    Last edited by Doug; 01-07-2010 at 06:55 AM.

  12. #30
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    I found this too on my last stay in hospital. Many of the nurses and all the student doctors went away and did some homework on Wegener's. It might save someone's life at some time in the future or at least save them from the crap that many of us on here have been through.

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