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    Default How to know when you're having a flare

    hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?
    Summer

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    I think that in general, you know about it when some of your original symptoms start coming back. For others (by no means all!) their blood results start to creep out of their new normal range.

    In my own case, the state of my sinuses is a good indicator and this was also the first symtom I had when developing Wegener's. However, renal problems can creep up on you with little in the way of symptoms, so you need blood results too.
    Last edited by Jack; 07-19-2009 at 08:11 PM. Reason: House keeping ;)

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    Hi Summer! As Jack said, usually it's when your original symptoms start creeping back. You can also have a flare and not know it, like me Apparently accoring to my blood tests, I was having a flare (high ANCA) but I didn't feel any different, a bit tired maybe but that could have been anything. Goes to show that you need to keep up with regular checkups and stay in touch with what your body is telling you.

    Do you think you're flaring now?
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Quote Originally Posted by andrew View Post
    Hi Summer! As Jack said, usually it's when your original symptoms start creeping back. You can also have a flare and not know it, like me Apparently accoring to my blood tests, I was having a flare (high ANCA) but I didn't feel any different, a bit tired maybe but that could have been anything. Goes to show that you need to keep up with regular checkups and stay in touch with what your body is telling you.

    Do you think you're flaring now?
    What is considered High Anca?

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    I think high is anything above 10.
    Phil Berggren, dx 2003

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    First I want to thank all of you for being here! I don't write often...only when I need something usually so I hope you don't feel used. My son was diagnosed with WG/GPA in May 2010 when he was in kidney failure. He was having some nasal symptoms at the time but there was not permanent damage and the symptoms resolved with his treatment. He's had a couple of colds over the last year but has really gotten a lot better with no active disease. Then 3 weeks ago he had various symptoms that would come and go: sore throat, high fever, weight loss, diarrhea, and stuffy nose which was constant. We spent 2 days in the ER getting checked out with tons of labs. His ANCA was at 2 last August and 3 weeks ago it was 40. His sed rate and CRP were both elevated. His kidney function was stable. 2 weeks ago he had more labs and the CRP and sed rate were lower but the ANCA was 48 and he was feeling great although he still had a stuffy nose. 1 week ago he started not feeling well again with a severe stuffy nose with symptoms that have come and gone like a hip that hurt for 4 days and diarrhea. The stuffiness is a bit better on a stronger allergy medicine but now he has a severe sore throat. So far a pediatrician, rheumatologist, nephrologist and ENT have not been able to figure this out. The rheumatologist says if the allergy medicine doesn't work then she'll try Septra and then increase his prednisone. Questions: Does it sound like a flare? Has anyone had a sore throat as part of a flare? Does ANCA increase with a virus?

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    Default Re: How to know when you're having a flare

    how high did your anca get Andrew? my mom's is now 4.1 this is her first reading.

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    Default Re: How to know when you're having a flare

    For me, I feel like I ran into a brick wall. My ears go through pressure changes even though I had tubes put in for the Eustachian damage. I'll get some nose bleeds, extreme general malaise, pain in the joints and muscle aches and I generally feel like I've gone from 'current age' to 96. I will dose to either 40 or 60mg of PDX depending on how severe and how far along I am and get on the schedule for an RTX infusion as soon as possible. I usually don't progress beyond that before I am on the PDX. But my GPA is very aggressive when it comes back and so I try to stay on top of it and get on medications quickly.

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    Default Re: How to know when you're having a flare

    This art of knowing when you’re having a flare is tough. I’ve been most successfully treated with Rituxan, last series of 4 infusions was in January of 2018. Since Rituxan is the best drug for me I’m forced to return to that for treatment. This flare began suddenly 5 weeks ago with severe worsening of Polyneuropathy, return of Sinus issues and a cough that won’t clear up, a headache, inability to sleep, and signs of brain, cranial nerve involvement, plus extreme fatigue, pain, etc - all Of which have kept me in bed. In May of this year I was hospitalized for a month with seizures that nearly killed me, an intensive care stay on a ventilator, and pneumonia. The cause of the seizures hadn’t been identified and I remain on two of the seizure meds out of the three it took to control them. I was on a drug called Vimpat which seemed to help quite a bit - but my Vanderbilt neurologist refuses to keep me on it. No one here in Nashville is able to help so far and next week I’m flying to Los Angeles to see the Rheumatologist who seems to be able to recognize and treat a flare with Rituxan. Since none of my inflammatory markers are up it is difficult for most doctors to recognize what is happening with clinical signs alone. Hopefully this helps some of you who are in a similar situation.

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    Quote Originally Posted by sumsum5587 View Post
    hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?
    You don't note how often you are seeing any doctors about this disease or which specialties they represent. I'll look for your earlier postings to see if those questions are answered. Regardless, flares tend to come once you've been moved to lower doses of the primary drugs your doctor's using to bring your immune system into control. Jack and Andrew's responses, too, offer you excellent direction on this question. If your doctor sees you monthly, he/she probably sees blood and urine test results frequently enough to form a sense of trends in your measurables and whether they represent improvement or concern. If, between your regular visits, you experience symptoms, you may want to give your doctor a call, at least, to give him/her a chance to evaluate your concerns about a possible flare. This is a potentially fatal disease, so your doctor should understand if you have a few false alarms until you zoom in on how your body feels and understand better what the creatinine numbers mean, for example, or why you should be concerned about blood in sputum, nasal discharges, or, um, well, etc.! Hang in there! Maintain your positive attitude, and remember this is your forum to use for questions, concerns, frustrations, and joys: we all care because we've been where you are!

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