Is this "normal" ?

WGs is not new to me,but tracheal stenosis only started a couple years ago. Only one surgery so far. Like alot of you, my desease (according to labs) is quiet. But i am being treated with pred for what seems to be the same symptoms my stenosis started with. Shortness of breath and loss of voice. My ent did scope me before starting pred. He says it looks very angry altho the narrowing is not that different than my last scope. So i have been on pred 40 mg for 10 days now. My ?- i have increasing shortness of breath, lots of bloody noses and most disturbing is the granulas i cough up every night. Never did this before. So is the pred doing its thing in producing these or is there a possibility i need to get my lungs or bronchi checked out. I did have a chest xray in november, but not these symptoms then. Thanks all. My ent is not a wg specialist but will consult with one for me need be.

I suggest you see your doc ASAP. Your symptoms seem consistent with active disease. ��

They scheduled me back on feb 9 but i'm thinking thats too long :(

That is too long. If they can't get you in earlier, perhaps a trip to the ER is in order. Forget the perhaps, go.
Dale

Oh dear... I would go to ER but make sure your see someone familiar with Wegs....You are in my thoughtsLet us know how you continue to do....Yours Susie

my local er doesnt know anything about wg...so after phone calls back and forth with my specialists i am out the door to the er where they are...2 hours from here. At least if there is something they will find it. ordering chest xray and cat scan and blood work...now i just need strength to get there. i am sooo tired. my husband will drive me there. Thanks for ur encouragement to go...im sure its best.

Yea!!!! You will be fine!!!!!! We need to be advocates for ourselves!!! Good Luck Healing thoughts going your way... Love Susie

Well, i'm home again...after a long 6 hour ordeal at the er. No infection. Whew. No bronchial stenosis. Whew. Still not much air.whew whew whew.lol But now we know and i will follow up next week with my new rhuemy. Good time to take a step back in life and realize what matters most. i honestly felt like i just wanted to die yesterday. But today is better. I can't wait til my kids get home! They stayed at my sisters overnite since we were at the hospital. Thanks again for reading and responding :)

Glad you are home. Did they do Chest X-rays or CT of the lungs to check on your breathing?

When I feel like I have diminished capacity, the first thing I do is clip on the pulse oximeter and check my oxygen levels in the blood (available on Amazon for under $30.00 for a decent one--read the reviews). If that is good, I try to sit down, relax and do something mindless (TV, read, puzzle, etc.), anything to clear my head. If after a day I still feel like I am diminished, I send a message to my rheumy and see if he has time to see me. He usually orders a chest x-ray then too.

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Originally Posted by im so blessed

Well, i'm home again...after a long 6 hour ordeal at the er. No infection. Whew. No bronchial stenosis. Whew. Still not much air.whew whew whew.lol But now we know and i will follow up next week with my new rhuemy. Good time to take a step back in life and realize what matters most. i honestly felt like i just wanted to die yesterday. But today is better. I can't wait til my kids get home! They stayed at my sisters overnite since we were at the hospital. Thanks again for reading and responding :)

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Can they see bronchial stenosis with an xray?
What about subglottic stenosis?

The drs at the er followed my rhuemys orders. They did a cat scan of my chest and they did a chest xray. I do have a stenosis. We knew that and im currently being treated with pred...not doing its job so we are considering trying rituxan. We shall see...

Quote:

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Originally Posted by im so blessed

The drs at the er followed my rhuemys orders. They did a cat scan of my chest and they did a chest xray. I do have a stenosis. We knew that and im currently being treated with pred...not doing its job so we are considering trying rituxan. We shall see...

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That's awesome news!
I hope it works well for you!

Wishing you all the best!