Possible Flare!!! Yikes!!!

[pberggren1]

You are right that he is not a WG specialist. I was on 50 for 2 weeks. I know the CT scan gives much more radiation - I don't know the numbers though. I hope you are wrong about the flare. I see the ENT on Friday the 15th and the Rheumy on the 29th. My energy levels are up much more over the last few days and still no joint pain, soreness, or stiffness. I will continue to monitor the situation.

[elephant]

Phil me too, I hope I'm wrong. I'm looking forward to your appointments this month. I'm keeping my finger and toes crossed for you.

[Sangye]

Phil, I agree with Elephant. This sure sounds like a serious flare. Your GP has good intentions, but doesn't know Wegs. Even with massive lung hemorrhaging and nodules (not large) my chest x-rays looked pretty normal. They should be doing chest, neck and sinus CTs on you to check for nodules, hemorrhage, granulomas, inflammation, etc...

Why on earth would s/he order an EKG and a lung function test? Neither makes sense given your symptoms.

I also think a jump from 50 mg down to 25 mg all at once is not good, ESPECIALLY if you're flaring and double especially if you're not on another immunosuppressant. That can cause the flare to go wild.

I suggest when you see your ENT that you ask him/her to get you into your rheumy asap.

[Jack]

This is not the time to be reducing the pred!

[Sangye]

I totally agree with you, Jack. Worst possible thing to do, IMO.

[moyan]

Good morning. I have a new question: I sound like an old steamship today, wheezing, could that also be WG?

[Sangye]

Is that a new symptom, Moyan?

Wheezing can be asthma or a sign of tracheal stenosis (aka subglottal stenosis/ SS). Wegs can cause SS.

[moyan]

It is not a new symptom, have had it for a few years and it makes me think that I have had WG for a few years. Not asthma, would be more frequent. I'll see the "specialist" today and talk stenosis. My constant mucus in the throat has got me thinking since I started reading here. Thank you for being here, Sangye

[jola57]

Phil, my pulmonologist had me do EKG, spiro test and lung capacity test when I was spitting blood, but also a CT which showed the dreaded granulomas in my lungs, after 3 months of cyto they were gone and I was back to normal. BUT I was on cyclo for a full year this time. Last time I was on 6 months and went into flare just after 3 weeks. As bad as cyclo st it is better that a full fledged flare. This is where I disagree and thi nk that being on cyclo is needed for as long as the bloodwork and self feeling is bad, when it gets better stay on cyclo to make sure that all is well and truly better and then slowly and concurently go onto mtx or something else. This is what I did this time and it is working so far.

[snooz23]

Moyan, I am also experiencing the constant mucous in my throat. I actually have for years. However when I was on high dosages of pred. it went away. When I dropped to around 15, it has returned full force! I am currently at 12.5, tapering 2.5 every 2 weeks until I hit 10 at which point I will reduce by 1mg/two weeks. However, I may make the suggestion I have seen here and go 1mg per month? I'll have to evaluate (possibly using Sangye's brilliant evaluating system--I like that). Anyone else experience the constant mucous in the throat?