Katie's story

[kattip]

My severe redness in both eyes about a year ago. After finally being sent to an eye specialist, she was diagnosed with Wegener's last December. She was sent to a rheumatologist (in Rochester, NY) and was put on prednisone and Imuran. We saw improvement but the redness in both eyes came back with a vengeance in the spring. Long story short, she was told by her opthamologist about an eye specialist in Boston named Dr. C. Stephen Foster. Katie contacted the office and got an appointment the next day! Dr. Foster was very concerned with the condition of her eyes and said that the disease needed to be treated aggressively with a combination of meds in order to knock it into remission. He sent us the same day to Dr. John Niles, a vasculitis specialist. Dr. Niles explained a treatment plan that would span 2 years. Katie opted to do infusions and started them the next day. Her blood test at the beginning of the treatment showed the ANCA (c) over 2,900! The second treatment was in June and she just did round 3 in early October. Her ANCA test showed her level in the 800's in June and now it is at 70!!!!!!!!!! We feel so blessed and thankful for these results that we wanted to share so maybe someone else can benefit. I am not sure of complete regimen of meds but I do know that t was a combination. I don't want to get into that area since everyone's case and treatment is different. Hope this helps someone.

The beginning of this message should read: "My 32 year old daughter had . . ."

[Pete]

Welcome to the journey through GPA/Wegener's. It seems Katie has some good doc's looking after her. Hope she continues to progress. There's someone on here just about 24/7/365 and from all over the world. Feel free to ask questions, share successes, and vent frustrations. We've all been there. Keep us posted about Katie's journey - and yours!

[mishb]

Welcome to you and your daughter and thank you for being here and there, for her.

The ANCA is certainly heading the right way so the infusion was the right call.

All the best to you both and I also look forward to hearing of Katies journey to remission.

[annekat]

Welcome to the forum. It sounds like things are on the right track and Katie is lucky to have such good doctors. Keep us informed as to how she is doing. Also, feel to post with any questions or concerns, and utilize the search function for more information in specific areas. And I'm sure that your post WILL help someone. I look forward to hearing from you again! :smile1:

[Aneinu]

Welcome,
It does sound like things are progressing nicely.
As a father of a son with gpa, I follow these stories closely.
Keep us posted please and God bless.
Thank you

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[renidrag]

You got some real good referrals to real good Doctors. Quite a few folks here see Dr. Niles, at MGH I think. Welcome from a New Englander, hope all continues to go well.
Dale

[annekat]

You got some real good referrals to real good Doctors. Quite a few folks here see Dr. Niles, at MGH I think. Welcome from a New Englander, hope all continues to go well.
Dale Dale, you finally got your picture into your avatar! Nice to see you! I know, off topic, just sayin'.

[debra]

Kattip,wow! Awesome treatment! Dr. Foster is the eye specialist I tried to get a ride to Boston for.. I know this man is supposed to be the best.. I know had I gotten to him,my story would be a hell of a lot simpler... I am truly happy for u guys.... Deb. Who wishes she got to see Dr. Steven foster back years ago,already...