Those whose sinuses are affected:

[TOBEY32]

As mentioned, in the last couple of weeks my sinuses have been "drippy", and it's been Kleenex-city. Now I'm getting the sinus "gunk". These things are like pre-diagnoses symptoms. The only change w/ meds has been 10mg Pred from 20mg in the last month. I don't see that doc for 3 more weeks, but gonna phone to see if I should return to 20mg. Also the nostril stench is strong right now. On friday my lung doc said she could smell it. Nice. One thing I don't understand (is this you?) is that at other times I've smelt cigarette smoke in my nostrils - even at home, and I don't smoke. Weird. And a not-for-the-faint-at-heart Q:
Am I the only one whose had to excuse themselves from a room before blowing their nose? I would'nt want others to see what my sisuses "produce" at times.

[Chris G]

A drop from 20 to 10mg pred is a big drop in one month. It's likely the cause of your increasing symptoms . What control meds are you on? Your wg does not seem to be under control. The odor you smell (and the gunk) is likely from a sinus infection. Long ago, I used to smell moth balls when I had bad sinus infections. That was long before my wg diagnosis.......I'm sure the doc thought I was nuts.

YES, call your doc!

[TOBEY32]

I assume the docs know what they're doing. Maybe not.
So maybe from 20mg to 15mg would've maybe been better? My other med is Cy: 2 tabs/day, 50mg ea.
Mothballs? Interesting. To each his own!
I have to say: I've been tapering down (10mg at a time) my Pred since April. Sounds rather fast (and a short period of time) when I hear some of you talk. Maybe going from 20mg to 10mg, though, triggered something. Till now I've had no problems.

[marta]

Hey Tobey,

I also think this is a drastic drop in pred. The first time I tapered under 20mg I was doing 2.5mg drops every 3-4 weeks. Now I'm even more conservative. My doc - who's a smartie and has worked at CC with Dr. Specks, wants me to drop 1mg per month. I just went down to 13mg this week. 10mg in one month at these doses seems freaky to me. It is a fast drop indeed from April with active disease. I know they tend to drop faster when you've been on it for a shorter time, but I think - and take my opinion with a grain of salt because I'm just another Weggie and not an expert - this is too fast for someone who's been diagnosed in April, the cytoxin is just starting to do it's job and the pred needs to be there to keep the inflamation (which is a disease symptom that causes most of the damage) in check while the ctx slows disease process down.

[Psyborg]

I'm going to agree 10mg is too much. I think 5 to 15 might be ok, then starting in 2.5 increments down to maybe 10? It really does depend on you as well. I did very poorly tapering for a while, then things improved later. But I'm having trouble with 5 down to 4mg now.

[Sangye]

Yup, too fast. You can drop pretty fast from the higher doses down to 20mg. Then you have to slow down a bit to reach 10mg. From 10mg to about 7mg is usually slower. Then below 5mg is the slowest. There are 2 reasons-- 1) you need the pred to help control the Wegs while the main immunosuppressant kicks into gear (as Marta explained), and 2) Your adrenals can't tolerate bigger jumps.

[NicShaf]

I agree with all the above, it doesn't sound like your Wegs is under control, and that is a huge jump in Preds under 20mg. I just hit 20mg last month, and I''m scheduled to drop 2.5mg every 4 weeks until I'm at 15, then we'll see from there. I was dropping 10mg per month from 60mg daily with no problems.
I know the smell your talking about. Mine didn't smell like smoke, it just smelled like infection...gross, i know, but once my medications stared to kick in, I haven't smelled it since. My sinuses are a little drippy most of the time, but not swollen and congested like they were when my WG wasn't under control.
You're not the only one who has crazy stuff come out of their nose. I have found myself in the habit of checking my tissue, just because I've had blood and stuff come out before, and I want to make sure everything is looking clearer. I accidently did it in front of my husband the other day, and he was a little grossed out...oh well.
I hope you can get in touch with your doctor soon and get everything straighted out.

[drz]

When your sinuses are infected a nasal sinus rinse should only be done in a locked bathroom since some pretty awful looking stuff can come out. Same with having a big sneeze or nose blow. It is also best to avoid such things before meal time if possible.

[Sangye]

LOL drz....