Hi,
In my first year of having WG, I didn’t get any treatment but pred at the acute beginning. 2 Biopsies from nose returned negative, so none of the docs thought that I must get treatment (they were wrong).
I was visiting about 10 ENT docs. My nose was sore, bleeding and full of "chunks", my ears were aching and full of fluid which refused to drain and my hearing was deteriorating. It was so scary.

I saw some ENT docs at hospital and some at their clinics. It was very frustrating.
One ENT at hospital after waiting 4 hours for him, checked me 2 minutes, very aggressively, and then told me: you have nothing, go home. He was rushing to eat his lunch.
Another ENT, which his name in Hebrew means "Slaughterer" was "devoted" to stand behind his name: he took all kinds of "weapons" and he said: first we clean your nose: he was "cutting" and pulling out the chunks. I don’t have to tell you how intolerable it was. I was bleeding terribly but it doesn’t bothered him. I was tearful I almost fainted. He continued without blinking. Then he gave me ointment that only made things worse.
Another one was quite lunatic He was speaking with "free associations", his clinic smells like dump (at least I was glad I could smell something). He told me I have nothing but stress, and proposed to me to get his homeopathic treatment, by cost of no less then 100 $ for a meeting, not less then 8 meetings. Of course I never returned to him.
Another one, in hospital, was very enthusiastic to have me without thinking too much he declared: "we are going to make you tubes now". he gathered his students to come and see him doing it. I had to cool him down and disappoint him and his students. I didn’t trust him.
There were others, less challenging. I remember for good one ENT, very old, who was very empathic to my crying and desperation. He offered me 20 mg pred for 5 days, which was not strong enough, as you know.
Finally, I settled with ENT doc who was humble enough to say a lot of "I don’t know" , who is very gentle while checking me, who have hearing aids, which means that he is kind of "one of us". his secretary is letting me in whenever I need, without waiting. But still, he lookes terrified and helpless every time I'm getting to his office, something like "OMG, here she comes, what am I going to do with her?". Poor doc. lately he have find for me one experienced ENT doc and he send me to him while breathing in relief.
My nose became more saddle this year. I'm worried about it, and depressed
On wednesday I'm going to meet him. Long trip, about 2 hours each direction, using my car, train and texi. I e-mailed him and he was proud to tell me that over the years he saw about 10 weggies and maybe some more with unclear diagnosis. he will be the first ENT I'm going to see, after almost 5 years of WG, who already saw any weggies but me. he asked me to bring update sinus-CT.
any suggestions as to what to ask him will be very welcomed.
to be continued...
BTW- since I'm now feeling secure and safe here, I put my pic at my profile, so you can say Hi.
thank you for being here.