Hello

[Ruotsi1]

Thanks Annekat. I am located right outside of Tacoma, my rheumatologist and Pulmonologist are both located in Tacoma. I have tubes in my ears, so am hoping to find a local ENT, but willing to drive to UW if needed. My current ENT said he would continue to manage my ear tubes, but stated he won't manage my Weg's. I do have sinus issues, so would like to follow up regularly. Thanks again.

[annekat]

Thanks Annekat. I am located right outside of Tacoma, my rheumatologist and Pulmonologist are both located in Tacoma. I have tubes in my ears, so am hoping to find a local ENT, but willing to drive to UW if needed. My current ENT said he would continue to manage my ear tubes, but stated he won't manage my Weg's. I do have sinus issues, so would like to follow up regularly. Thanks again.

Nice to know you are nearby. If you feel your rheumy is knowledgeable and experienced with Wegs, I would be interested in knowing his or her name. But I am a Medicare patient so don't know if just anyone would take me. I do think I'd like to see a rheumatologist some day to look over my case. But I'd want one with decent Wegs or vasculitis experience. I do know from word of mouth and research on the web that there is a rheumatology clinic at UW and that some of the docs there have done research on vasculitis and have experience with it. A fellow forum member has given me the name of one who he sees. I can share that by private message if you want, since that is how it was shared with me. My ENT also mentioned UW as the place I'd be most likely to find someone of that ilk. Good luck, and maybe our paths will cross some time. BTW, your case has a lot of similarities to mine.

[mr.g]

Hello. Are you north or south of Tacoma? I live in Federal Way. I was dx in the fall of 2010. I would buy the coffee if we three, myself, Annekat, and you could get together for a chat. My wife would be interested in how other are dealing with WG.

[HopeinTN]

Check out the following kink to prepare for your appointment and make planty of notes before hand.

Wegener's granulomatosis: Preparing for your appointment - MayoClinic.com

[HopeinTN]

OMG! I just read what I posted.....it's not Kink, but a link. Oh my. I have too much on my mind to be posting. HA HA HA!

[AmyA]

Welcome to the group! Your story really sounded familiar to my own. Started with the lung nodules, which led to a 5 hour VATS surgery to drain an out of control infection, then while recovering had horrible joint pain in my ankles and elbows. After tons of lab work my rheumy (who I was seeing because they thought it was arthritis) dx me with WG in june 2011. I also have sinus issues but consider myself lucky because I don't have kidney involvement. My rheumy takes care of all my lab work and care. I do see a E.N.T. and a lung doc, but they pretty much let my rheumy make the final call. Look out for all the side effects with the Prednisone. I was totally unprepared! taking it too close to bedtime can keep you awake and the weight gain for me was unbearable...As I tapered off after a year and a half of taking it, the side effects and weight began to be easier to manage. The joint pain I experienced went away with 2 weeks of starting the steroid. I hope you find all the answers you need here, it's a great site to get real info, from real patients.