New from North Carolina

[Meredith]

I was diagosed approx. 7 years ago. Started having ear infections, especially on vacations when we went swimming. 7 years ago one of the glands on the side of my face became swollen, very painful. After multiple trips to the physician and him telling "I would feel better in a couple of weeks" I went to a Eye Ear Nose Throat speacilist. I was so sick that he put me in the hospital, did tissue samples, multiple tests but could not find anything. He felt that something was wrong and would not give up. It took two months but was finally diagnosed with WG. I am now seeing RA doctor who is great. Still on Cytoxan and Bactrim. Have been on preds lately because of inflamation in the eyes. Have had to have 2 Subglottic Synosis. The good news is that I have actually felt better this past year than ever before I was first diagnosed. Hope it continues. Have started working out, tired of all the weight I have put on. I really cannot complain, could be worse.

[misskay]

Welcome to our little place Meredith.... we're neighbors... I'm in TN :)
Glad to hear you're feeling well. Hope it continues. Gives me hope.

[elephant]

Were neigbors too, I live in south carolina. Meredith, how long have you been on cytoxan? Bactrim? Glad to hear that you are feeling better this year!

[Sangye]

Hi Meredith, happy you found our group! I'm a little confused. You said you were dx'ed 7 years ago but that you're still on cytoxan?

[JanW]

That was my question too. What kind of surgery did you have for your stenosis? If that's your main/primary, symptom, it would seem that ctx may be a bit extreme. I have stenosis also (one surgery so far) and am only on 15 mg mtx, no pred.

[Jack]

I'm very concerned about your medication regimen, it seems to be far from that normally expected and I would even consider it to be dangerous. I think you should consult an expert in this field immediately. I'm sure there are members of the forum who can help with details of contacts in your area.

[JanW]

University of North Carolina would probably be the closest to Meredith. There is a young female rheumy there who spoke at the Symposium. She is probably listed as a VF consultant on the website.

[ncmommy]

I live not far from you, just down the road in Garner. Who is your doc? Glad you are feeling well :)
Robin

[Doug]

http://vasculitisfoundation.org/

This is the one listed as a consultant-

ALLEN, NANCY B., M.D.
Rheumatology and Immunology
Duke University Medical Center
Box 3440
Durham, North Carolina 27710
Phone: 919-684-2965
Fax: 919-684-8358
Web: http://rheumatology.duke.edu/

[Jack]

Are you still with us Meredith? :unsure:

[Meredith]

Still here - just been so busy. I see Dr. Laster in Charlotte - he is wonderful. Have tried Celcept but had no luck with it. Still on cytoxan - hoped to be tapering off but had a flare up with my eyes so we will need to go another few months to make sure I am OK before he will start backing down on the meds.

[Meredith]

My mother-in-law and sister-in-law live in Clayton - was just up at the fair. Hope you are doing well.

[Meredith]

I see Dr. Laster in Charlotte