Is it possible to relapse without nose issues?

[Orpheus]

I have tried to get a hold of all my doctor's without success.

For the last 2-3 days I'v been extremely tired with severe headaches (i very rarely get headaches in general and the last time i did is when I was really sick). Im also short of breath when i finish my shower and my body aches. With this information could it be my disease or since my nose is fine it is highly unlikely?

[gilders]

Wegener's can effect any part of your body. It is true that the nose and sinuses are almost always effected and are usually one of the first visible signs (e.g. you can see a nose bleeds, but can't see various aches), but you can't rule out a flare due to no nasal involvement.
I have had this disease for over 20 years. Your symptoms are typical of a flare, but also typical of the effects of Wegener's even when in remission (as far as my experience goes).
If making an appointment with your dr can take a while, I'd suggest making an appointment now and canceling if you improve before the appointment date.
I don't want to put you at risk and others may recommend something more immediate like going straight to A&E. They may be correct, but I never act on symptoms unless they are extremely severe or I've had them over a week. I've come to accept that most of my life is a struggle and I never feel well, especially since my kidneys are deteriorating.

[Orpheus]

About 30min after I made this thread I started to get nasal issues. I didn't want to at first but I have my Rheumatologist cellphone number, when the nose systems started I texted him. He told me to get to the ER. When I got there he was waiting for me so I had 0 wait time.

He has ordered a bunch of tests and put me back on a prednisone (only 100mg) and I'm stuck in the hospital till at least Monday.

[gilders]

I think you made the right call. You may have to live with having bad days even when in remission, but add an obvious relapse indicator like nasal problem and you need to get on top of it pronto.
Keep us updated and good luck.

[annekat]

Did you say "only 100mg" of prednisone? That is an awful lot. Unless you mean IV pred. I know people in pretty bad shape may get that much, temporarily. It does sound like a flare, but we don't all get put into the hospital for that. I do think it's good you went to the ER and that your doc is great for meeting you there. It sounds like this is pretty early in the flare, and that you have been smart in observing and interpreting the symptoms. I hope you get turned around quickly and this doesn't last long. We can all learn from flares, big or small, and from other people's as well as our own. Let us know how it goes.

[Orpheus]

Did you say "only 100mg" of prednisone? That is an awful lot. Unless you mean IV pred. I know people in pretty bad shape may get that much, temporarily. It does sound like a flare, but we don't all get put into the hospital for that. I do think it's good you went to the ER and that your doc is great for meeting you there. It sounds like this is pretty early in the flare, and that you have been smart in observing and interpreting the symptoms. I hope you get turned around quickly and this doesn't last long. We can all learn from flares, big or small, and from other people's as well as our own. Let us know how it goes.

Ya sorry ive been on higher dosage, the doctor was considering a higher dosage then 100mg but since I had a pretty bad reaction to it last time (i got avascular necrosis in both my knees and ive been basically bed bound for over a year) and the fact he isn't 100% sure it is my disease (it may still be an infection) he went with the lower dose.

[annekat]

Everyone is different! When I have a moderate flare, I might go from my current 10mg to 20-25mg. And maybe have my MTX increased a bit. But I have a different history than you do. Best of luck!

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[vdub]

Bummer! It's rotten to be in the hospital, but at least your doc is cautious.

Is it just me or do most ER visits or running out of meds seem to happen on a Friday 20 minutes after the doctor's office closes? I can't count the number of times that has happened to me. On two occasions of a Friday ER visit, it resulted in the same thing that is happening to you -- a weekend hospital stay. At least the food has now improved at most hospitals and they generally have good TV. :-) Still, its not the same as being home, especially when you have 3 or 4 tubes hanging out of you.