How do you know?

[NicShaf]

I looked through some other posts, but I'm still kinda lost when it comes to flares? How do you know when you're having a flare?
I ask because my Ctx was lowered a couple weeks ago, and tomorrow I was planning on lowing my Preds again, and I'm concerned that some symptoms are coming back. I am having a hard time determining what is environmental and what is Wegs being that this is my first go around with the disease.
For example, I was fine until my husband and I spend a couple days in the mountains this past weekend. Now my nose has more blood in it than it has in a long time. Could it be the dry weather up there? Some family memebers were also suffering from nose bleeds. Or is it something I should be concerned about? We've been home for 2 days, and I'm still waking up with blood and mucus in my nose.
This is the only symptom that I've seen, I feel a little tired, but I didn't sleep very well while on vacation...we don't have kids in our home, and when you go on vacation with families with young kids, its LOUD! :)
Maybe I'm just being overly paranoid, but I thought I'd ask what your thoughts were. Thanks!

[Chris G]

For me a nose bleed would be a definite sign of a flare. I've never had a nose bleed except during a wg flare. Also, if yours were due to dry mountain air, I would think that 2 days at home in your normal atmosphere would have resolved it by now.

It's SO hard (& frustrating) to determine what's what. Right now I have a similar quandry.......I'm tapering pred after my rtx infusions, and I've developed a cough over the last 3-4 days. This morning I woke with a sore throat.....down low in the throat, not at the back of the mouth like I'd have with a cold. SO.....is it a cold? Or is it wg trach symptoms?? I'm also supposed to lower my pred tomorrow. However, I'm not going to lower it until I make sure that this is not a wg flare. I guess I'd suggest the same to you Nicole.

[JanW]

Never had a bloody nose except when I had undx WG. My doc always says that if anything seems slightly amiss symptomatically, I should call and come in for blood work and an exam. Crucial to catch these things early.

[NicShaf]

That's where I'm more frusterated...I just had blood work done and everything looks great as far as that goes. That's what makes me question everything. Grrrr. I think I'll email my Rheumy today and see what his thoughts are.

[Jack]

I think it will just be settling down to the changes that is causing the problems. If you think back to when you were first diagnosed - is it as bad as that? No, almost certainly not! Does it feel like things are getting worse and you are heading that way? If the answer to that one is yes, then you should act, but if things seem pretty much in control it can probably wait for a bit, especially if this is supported by recent blood tests.

[drz]

How will I know if I am having a flare?

I asked this question since i am tapering my prednisone down 1 mg a month and now at 7 mg day. He had asked me several questions about symptoms to which I had answered no. He said if the answer turns to a yes, then i should have labs right away. The questions covered the usual symptoms of GPA, like pain in joints, blood or color other than clear in mucous or what you cough up, extreme fatigue, bloody nose, a feeling the room is spinning, blood in urine and some others I can't remember, and concluded by saying if you having any symptoms that feel like WEGS did before diagnosis call and get some lab work right away. For me the lab work generally seems valid although often my lab results lag the symptoms by a few days.

The goal is to monitor and catch any flare before it gets too serious but not to over react to any symptom since the more aggressive treatments also have risks. It is a balancing act that requires good communication between patient and treating doctor and mutual trust. Most changes only require minor tweaking if any but we all know that the GPA can start raging out of control quickly with little warning so we have to be vigilant and trust that we can catch it in time if it decides to break loose. Many of us suffered for many months or years before our diagnosis but now we know what to look for so we should be able to react much quicker, right?

[elephant]

I head to the Cleveland Clinic tomorrow and will see if I stay on cellcept or not. I have been on cellcept for over two years, and my question for her," do I have a small flare since my left maxiallry is swollen?" I understand the confusion if its a flare or dry air....but like Jack stated you would feel more than one symptom. I have freak out sessions once in a while. Is it or isn't it???