I'm glad I'm not alone, and happy I found you!

[calfaro443]

Hi Elephant,
She has confirmed that it is Wegeners and so has my Ent. I get blood work done every 6 to 8 weeks just to check up on things. I never doubted I had it for a minute. WG has up until now only affected my sinuses and eyes (visibly) but I get pain in my jaws, headaches, dizziness and have had unexplained rashes on my arms and legs and so forth.
I did go to the Vasc. Found. list and found a few docs that I wanted to see. When I called the clinic (reseach center for rare diseases) I could only get an appintment with her. She works with him in the same clinic but her name wasn't on the list.

[elephant]

Calfaro, are you talking about Dr Carol Langford, at Cleveland Clinic ?

[Col 23]

Welcome Calfaro, Havent got anything to add however understand the pain in feet and eyes. It might not seem like it
but it was good that you finally got a diagnose. You do think your going crazy before diagnose. Reading everyone's stories we
have had all these weird diagnoses before diagnosed with WG. My eye doc was also the one that recognised the symptoms and sent
for bloods.
cheers Col 23

[Sangye]

Calfaro, if you've been unable to taper below 20mg since January, it may be that the mtx is not strong enough to keep the Wegs in check. That's a high dose to stay on for 5 months, with no end in sight.

[calfaro443]

Sorry I meant My rheumy.

[calfaro443]

I thought so too. I get blood work done today and I'm sure it's not gonna be as good as the last time I got it done. I do think she's going to put me on a higher dose. She's trying to bring my pred's down but I just can't do it without feeling miserable.