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Thread: Flare?

  1. #1
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    Default Flare?

    Hi,
    I'm brand new here and I hope this is the right place for this question. Is it possible to be having a flare when your blood work shows anca and sed rate look normal?
    For the last two weeks I've had a screaming headache, face pain, a super runny nose, sweats & chills but no fever, and a general feeling of sickness and fatigue. This was how I felt when I was first diagnosed about 9 years ago. Only back then I also had nasal crusting and a perforated septum and a bunch of nose bleeds.
    I don't have and bleeding or crusting now but I have every other symptom.
    My GP is baffled and has offered no relief. 12 days of pain and sickness and I'm really get sick of feeling so sick. I'll be making an appointment with my Wegener's doctor tomorrow, but I doubt I'll be able to see him all that quickly.
    I guess I just want to know if anyone gets their WG symptoms even when their labs don't show anything.
    Thanks

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  3. #2
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    Default Re: Flare?

    Sounds like a flare to me. Hope you can see your wegs docs soon.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Flare?

    It's a stupid disease isn't it?! Certainly seems like it's a flare and yes it's quite possible to achieve without blood work showing anything/much wrong. Can you get on the list for a cancelation at your Wegs Doc? That might get you in earlier.
    Forum Administrator
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    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: Flare?

    Welcome to the forum! I think it's possible that the blood results will catch up with the symptoms at some point, but it would be nice if you got an adjustment in meds to deal with it before that happens. Each case is a little different and each person's symptoms and blood work will react in different ways to a flare. I hope you can get some help soon. Keep us posted..

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  9. #5
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    Default Re: Flare?

    I myself am someone whose blood work has never been a reliable indicator. Doctors don't like to treat based on symptoms, which I understand, but for some of us it is just what has to be done. I have been in your exact position many times. With the symptoms you have there is a good chance your WG doctor may want you to see an ENT first to rule out other causes of your symptoms - like infection. I second Andrew's idea of getting on the waiting list- perhaps you could see an ENT before then ? Just a thought.
    My WG doctor uses the ENT people a lot because we are treating symptoms and not something more defined like blood work.

    One time, many years ago, I was sick on and off a lot. It was hard to get appointments with the WG doc because he is a busy guy and THIS time I was in just too much pain and suffering to "wait a couple of weeks". I went to the doctors office first thing in the morning and when the nurse came out she asked "Why are you here? Do you have an appointment"
    I said "No , I don't have an appointment but I DO have an illness. I'm not leaving until I can see the doctor. "
    This is a very unusual thing for me to do but the accumulated pain was clouding my judgement- maybe in a good way this time.
    They were able to fit me in that morning and were not offended by my behaviour.

    I'm not suggesting you do this exactly but to encourage YOU to do what you have to do to be assertive if you are really sick. With this illness we frequently do not have the luxury of waiting three weeks to see someone.
    I hope you get in soon and get to feeling better soon.

    A last thought- sometimes it helps to ask to talk to the docs nurse and explain your situation and she/he can work you in sooner. This has worked for me many times.
    Last edited by me2; 08-02-2019 at 01:51 PM.

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    Default Re: Flare?

    My primary care doctor just sent in a script for prednisone and another one for an antibiotic. He's still not sure if I'm having a flare or if it's some sort of an infection. I'm just happy that he's trying something. It's been a tough week.

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    Default Re: Flare?

    I contacted my rheumatoidologist today with similar symptoms, her nurse told me to see my PCP, really? SMH

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    Default Re: Flare?

    Quote Originally Posted by WickedCoolName View Post
    My primary care doctor just sent in a script for prednisone and another one for an antibiotic. He's still not sure if I'm having a flare or if it's some sort of an infection. I'm just happy that he's trying something. It's been a tough week.
    At least that's something. Hope the pred works quickly!
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    Default Re: Flare?

    Quote Originally Posted by WickedCoolName View Post
    My primary care doctor just sent in a script for prednisone and another one for an antibiotic. He's still not sure if I'm having a flare or if it's some sort of an infection. I'm just happy that he's trying something. It's been a tough week.
    If it's indeed a flare then the pred will make the difference, if the dose is enough. How much did he prescribe ?
    Only in 2 flares my blood tests were not normal.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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