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WeggieParent
09-04-2010, 02:54 AM
This probably seems like a silly question but how do you know when you have a flare up? I'm not sure what to look for. Do you know it's a flare up because of the symptoms or blood work numbers or something else? My daughter is experiencing a runny nose & occasional cough. How do I know if that is her Wegener's flaring up or if it's just a normal runny nose & occasional cough? Her steroids are currently at 45mg & her Cellcept is at 2000mg.

Jack
09-04-2010, 03:01 AM
From your description it does not sound serious enough yet to ring alarm bells. If the problem with the nose develops into crusting and bleeding it should be investigated further because these are not symptoms that "Normal" people get.

elephant
09-04-2010, 03:24 AM
How long has she been coughing and having the runny nose? Is she feeling congested? Stuffed up?

WeggieParent
09-04-2010, 04:21 AM
She has been blowing her nose (clear drainage) for about 3 days. She uses a sinus rinse daily. The cough is very juicy sounding. She coughs when she wakes up & in the evening 2-3 times. I've developed super-natural mom hearing & can hear a cough or sneeze a mile away. Our part of the country is very heavy in ragweed & allergens this time of year so I'm not sure if I should be concerned or not. I wasn't sure what a flare-up looked like or how to determine if that was the problem.

Jack
09-04-2010, 04:32 AM
In very general terms a flare will show as a recurrence of the original symptoms, but of course with Wegener's it is not always the case and it may come back in a new form. In my case, I used to get nasal crusting and joint pain as the indicators and these symptoms were supported by blood work.

misskay
09-04-2010, 05:28 AM
If the cough sounds wet I'd get her checked. Better safe than sorry.

elephant
09-04-2010, 09:09 AM
Since her immune system is low, it is good to see the Pediatrician just to make sure it's not a infection....most likely a viral infection. I agree with Jack it probably is not WG, but it is good that you are on top of her symptoms.

drz
09-04-2010, 11:14 AM
From your description it does not sound serious enough yet to ring alarm bells. If the problem with the nose develops into crusting and bleeding it should be investigated further because these are not symptoms that "Normal" people get.

Can you have a remission or "smoldering Wegener's" and still have occasional bleeding or blood in the nose?

elephant
09-04-2010, 11:49 AM
The occasional bleeding could be dry weather or lack of moisture, but like Jack stated before you usually have other symptoms that go with it...like headaches, ear or eye pain, joint pain, fatigue, short of breath...
It is always good to get it checked out if you suspect something is not right.

JanW
09-04-2010, 11:49 PM
For what it's worth, my ENT always asks me to divide symptoms into what happens usually and what happens unusually. So, if you have occasional blood in the nose, I'd say, no, that's no smouldering WG. However, if you've been doing great for a year and start to get nosebleeds every week or so, I'd be suspicious and look into that.

sue7211
04-23-2011, 05:19 PM
I have a flare up question. My son has been cruising along fine on 5mg prednisone and 150mg Imuran after WG diagnosis with kidney failure last May until last week when he developed a very stuffy nose, sore throat and fatigue. A couple days later he had a high fever for a few hours and felt worse. We saw the pediatrician who alerted the rheumatologist and nephrologist who sent him to the ER. Once there they determined that his white count, number of red blood cells in his urine, and ESR and CRP were elevated. All of this could be explained by a bacterial or viral infection or a WG flare. They offered us observation in the hospital or home and we chose home. He seemed to get better but then on day 6 he developed diarrhea and they sent him back to the ER where they could still find nothing definitive except we were told then that his ANCA from the first ER visit was 40. Last May it was 64, June 17 and August 2. Does an elevated ANCA automatically mean that he's having a WG flare or can it also become elevated with an infection? His regular rheumatologist has been out of town so it's been difficult to clarify. We follow up on Monday. Thanks for your help!

pberggren1
04-23-2011, 05:44 PM
ANCA can be quite unreliable. Did he have ANCA tests done after August 2 last year? Say like in December or March of this year. I know I always had ANCA tests done about every 2 months at least, even when I was doing good. This way you can track to your symptoms. For me over the last 8 years ANCA has been a totally reliable marker until just recently but it could be because of a bad lung infection I have and the antibiotics I am on. In most cases if it looks like Wegs it probably is but having the Wegs specialist involved is a must. I would be lost without my Wegs specialist. I hope your son gets better soon and his regular Rheumy can clarify things.

Chris G
04-24-2011, 12:12 AM
For me, the anca tests have always been a reliable indicator of active disease. If it were me, I'd be assuming the wg is flaring, and perhaps higher doses of imuran are needed. Also, as I've read posts from many of the more experienced weggies - I think we must always FIRST assume it's wg related.

Jack
04-24-2011, 12:46 AM
ANCA is another diagnostic tool in the box and while it may not stand up on its own an elevated level may well confirm suspicions, especially if it responds to Wegs medication rather than antibiotics. In my own case the ANCA levels do reflect Wegener's activity, but my readings are always positive even when I have been well and free from symptoms for many months or even years.

Sangye
04-24-2011, 01:43 AM
Like the others have said, ANCA is not considered a reliable indicator of disease activity for most people. Dr Seo doesn't even check mine.

It may be just a regular bug. When I get a cold nowadays I get extremely weak from it.

delorisdoe
04-24-2011, 01:45 AM
it is incredibly reliable for me. Just another way in which this disease is different for all of us.
leigh

drz
04-24-2011, 01:56 AM
My ANCA scores seem to correlate with severity of my Wegs activity.

sue7211
04-24-2011, 03:44 AM
Thanks for all your replies. Phil I believe my information was not entirely clear. The numbers by the months were actually his ANCA levels not days of the month. He's had a couple of colds since he's been immunosuppressed and he got over them fine. He is better now except for a very stuffy nose still. I appreciate your collective wisdom and the group consensus that if it seems like Wegener's it probably is until proven otherwise!

maria garcia
04-24-2011, 06:09 AM
With WG is the cough Usually Dry?

Jack
04-24-2011, 06:56 AM
Mine is very wet. I cough up huge amounts of mucus.

Sangye
04-24-2011, 07:02 AM
Maria, it depends on what is going on in the lungs. Both times my lungs have hemorrhaged I only had a small, dry cough. Not even as bad as what you'd get with a cold!