And yet another newbie

[ShaniBooT]

What do you mean about whom he or she refers us to? Sorry were so new at this and don't understand a lot.

[Sangye]

Just before we went on the Rituxan, Dean ended up in emergency he just had gotten down to 10 MG of Pred and he was getting very bad headaches and eyes hurting and he started coughing and then throwing up. Our doctor had Dean have a MRI. Dean was infected with Wegeners in his brain and he had a nodulel on his lungs again. The doctor put him on the Rituxan infusion's and put him back on 60 MG of Pred. That is about 7 weeks since he was on 60 MG of Pred. Now he is back on 10 MG. It has been about two weeks since his Rituxan infusion. We are going in to see our doctor on Monday. Hopefully he will put him back on a higher prednisone. Dean says that the headaches and eyes hurting is only in the morning when he gets up and it gets better during the day.
Barbara and Dean

Okay, I'm glad they did the MRI. Wegs involvement in the CNS is uncommon but is generally much more complicated to treat. I know I sound like a broken record, but as we hear more details of Dean's case I have a greater sense of urgency about him getting under the care of a Wegs specialist.

[ShaniBooT]

Dean has lost most of his hearing and he has problems with infection's in his sinuses. The headaches and eyes really hurt and he is starting to cough again. Thank goodness we are going to doctor tomorrow. Can I ask where there is a Wegeners specialist in Seattle? Can Dean's doctor call and talk with him? We are at the Pollyclinc in Seattle.
Thank you so much for any information.

[Al]

It sounds like you really need a team. The only doctor I know well at Polyclinic is a family doctor (she takes lessons from my wife). I can tell you that my lung guy is excellent (the second guy, not the first), though a bit busy. His name is Jeffery Cary, at Minor and James, and he is very up on Wegener's and such. My main doctor, Robert Winrow, is a kidney and liver guy, also at Minor and James. I recommend him highly, along with Ashley Jefferson at the University of Washington. They are both extremely smart and knowledgeable, and great people as well. This should get you started. Very few ENTs are really into Wegener's. They, like every the typical neurologist, will spend months looking for another explanation before sorting out what yu already know. Let me know how it works out!

Al

[Sangye]

Dean has lost most of his hearing and he has problems with infection's in his sinuses. The headaches and eyes really hurt and he is starting to cough again. Thank goodness we are going to doctor tomorrow. Can I ask where there is a Wegeners specialist in Seattle? Can Dean's doctor call and talk with him? We are at the Pollyclinc in Seattle.
Thank you so much for any information.

Hopefully some other members out west will post the locations of Wegs specialists. There are newer centers forming out there. You will likely have to travel.

Meanwhile, you can go to the Vasculitis Foundation website and look up VF Consultant doctors. They will consult with Dean's doctors free of charge. That's the good part. The bad parts: they aren't Dean's personal doctor, you don't have the ability to speak with them or ask questions, and you're at the mercy of your local doctor's ability to communicate and understand the recommendations.