Flare Ups

[WeggieParent]

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]

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]

How long has she been coughing and having the runny nose? Is she feeling congested? Stuffed up?

[WeggieParent]

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]

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]

If the cough sounds wet I'd get her checked. Better safe than sorry.

[elephant]

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]

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]

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]

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.