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Thread: is this a sinus flare op?

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    Default is this a sinus flare op?

    Hi, we are new to the site but my Wife has had W. 7 years now and this is the first time she has had problems with the sinus area. We think it is a flare up but xrays and ct scan don't really show much. Her head, mouth, nose, ears and face have been hurting for 2 weeks now and has been treated with antibiotics for a sinus infection but the pain has only gotten worse. [she also is blowing out globs of blood thru her nose. Her specialist isn't convinced it's a flare up yet since her xrays are good. She has her regular blood tests scheduled in 4 days but can barely hold on until then because of the pain. She gets a little relief from 40 mgs of predizone. We really don't know what to do at this point and I wonder if people on here can give us some information on their W. sinus flare ups.
    Last edited by splummer; 03-20-2016 at 03:53 AM.

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    Seems to be a flare to me. What is her specialist's specialty? Infections that don't respond to antibiotics suggests that wegs is flaring. I suggest contacting her doc and pushing for an immediate appointment and labs.

    Good luck!
    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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    I agree with Pete. This sounds serious. My wegs started in the sinuses and I vividly recall the intense pain. If it is a flare she needs treatment soon before it affects the nerves in the area. Please see a vasculitis specialist - regular ENTs rarely see Wegs patients in their entire careers and are unlikely to be up to date in their knowledge of the disease and its treatment options.

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    Thanks Pete, Her specialist is a [excuse my spelling] Rumatologist. Sinus is new to us as her last flare up 2 years ago was kidney. The ENT Doc he sent us to last week thought he saw some W. build up in her nose. I'm not sure why he is waiting so long this time.

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    Just adding some frustration here. Doctors are way to quick to throw antibiotics at things! This is so wrong! Unless they cultured and found the infection, I don't like this, and I see it over and over again... If these are given like candy, which here they are, what happens when we really need them??? I will tell you, they may not work! Also hospital infections are rampant and since many of us with this will be in there at times, the infections from here will get us before the actual sickness of wegeners! Please question antibiotics in every circumstance... Since wegeners effects the nose, this doesn't surprise me, that she's in pain. Just because one area wasn't effected before, doesn't mean it won't be in the future... Man, I hate this sickness! It just bites... Good luck, on getting relief, I hate sinus stuff... Debra...
    Live,love,and laugh...

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    Max, do you know if the W. sinus treatment you had is the same as the treatment for other area's. In her case for the kidney it was predazone and 4 infusions of Rotexan. We will be calling the Specialist on Monday morning again. My wife also is concerned about it causing more damage if they don't take care of it soon.

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    Why does she have to wait 4 days for labs - seems the doc could order the labs other than scheduled date? They can do them at a local hospital if office closed - doctor would just have to order the tests.
    Last edited by Middlesista; 03-20-2016 at 10:54 PM.

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    Is your wife rinsing her sinuses? That will help clear some of the crud in there. You can get a sinus rinse squeeze bottle or a neti pot at a drugstore. They come with pre-measured saline packets. You'll also need a jug of distilled water. Hope this helps if she's not doing so already.
    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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    That's when the Doctor scheduled the blood tests but we'll call on Monday and try to get things moving sooner. The Doctor seemed more concerned that the 2 liver tests went up last month and had her stop the cell-cept maintenance drug. Her liver function test improved after that but the sinus pain started about 2 weeks ago and are getting worse.

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    Plummer, if the doctor stopped the cellcept, then it would make sense that this would stress her system enough to trigger a flare? Just from studying here it seems any change in meds can create a flare... Going off of cellcept, or rather being taken off, would certainly be a stressor for her. Even changes in everyday stuff can do this, stress for example, so a med change like this could trigger a flare... As far as treatment for different involvement, im not sure since im under treated, but would think from reading here its irelivant were the inflammation presents, the goal is to put it down, however it also depends as you know, the condition of the liver or kidneys, since some meds need to be avoided, like youre wife being taken off... Good luck on getting in sooner... Debra...
    Live,love,and laugh...

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