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Thank you.
Great suggestion.

WOW! $60,000?
Obviously she has employer based insurance and not Medicare. Guess she’ll have to see if her doc can somehow justify the procedure. Don’t know surgeons name, but she was told the best...

Has anyone had rhinoplasty for saddle nose that was covered by insurance? My daughter has been in “remission “ for about 3 years, although still takes about 3mg prednisone daily. Her doc has recently...

Very helpful. Thank you, Helen.

Good suggestion about nasal spray. I'll make sure she brings some. Thanks.

Thanks for info. Actually it’s my daughter with Wegeners and we are planning our annual mother/daughter trip and thinking of Denver . She’s not officially in remission, but with bi-annual rituxan...

Any known effects of high altitude on Wegeners, especially if contained within the sinuses? Did an Internet search, but couldn’t find any information.
Thanks

Thank you you so much, Susan. I will pass this contact info to my daughter.

Looking for an ophthalmologist in NYC who knows about watering tear ducts due to Wegener's. Anyone know of one.
Thanks.

Thank you for your responses. Obviously still more tests to do. Hoping for the best. Evidently a scan was done while at the ER for the gastrointestinal issues, wanting to rule our appendicitis....

It's been a while since I have logged in. My daughter has been progressing well over the past year, is down to 6 mg of prednisone . Her last rituxan tx was about 9 months ago. We were all feeling...

My best to you in your search. The right doc makes this journey a little more comforting.

Dr. Paul Monach at Boston university Vasculitis Center is very well known for his work with GPA. Think I even read he was one of the docs who spearheaded the use of rtx.
If my daughter were still...

My daughter falls into that category, although while she is managing, she is still not in "remission." She continues to be on 10mg of prednisone , down from a high of 60 about 18 months ago. She...

Nikki. Please update us. I am worried about you. Did you have your appointment, see a doc, get some meds? Please let us know you are okay. Hoping your pain is subsiding.

I wish it only took 6-8 weeks for rtx to bring about remission. My daughter has had 3 infusions, two of them 6 months apart and this last one in May. For that, the doc did one mega infusion instead...

When my daughter was diagnosed at age 24, I was told this is mostly a "middle age" disease. It was clear to me after doing considerable research that she had WG long before she was diagnosed- she was...

Hi Joni,
I am also a "WG Mom." My daughter was diagnosed about 18 months ago. She just turned 26. This forum has been extremely helpful to me in understanding both the disease itself and the...

Thanks MaxD for your response. This scheduled rtx is actually not a maintenance treatment, though. She seemed to be doing fairly well, her prednisone was reduced to about 7, (although more recently...

Last August, my daughter had a series of 4 rtx infusions of 350 (units?) each. Her rhuemy wants her to undergo a second treatment, but is suggesting either 1 or 2 infusions of 500 each.
Has anyone...

My daughter had rtx infusions in August and is not yet in remission. Her doc wants to wait until February and begin another series if she still is not in remission. In the interim, her prednisone had...

Thanks for all your responses and good wishes. My daughter's doc has said he is reluctant to prescribe a narcotic pain med to younger patients (she is 25). From the reports of many, I believe it...

Thank you Donna. I have shared this with my daughter. I think she needs to have a discussion with her doc about this.

This is very useful information and I thank you all. Never occurred to me it could cause a flare up, but it makes sense as I reflect on this.
In response to Debra, her doc had reduced her 10 mg at a...

Has anyone been successful using acupuncture for headaches? As my daughter's prednisone has been decreased(she's currently at 10mg), her headaches have significantly increased. Icing her face helps a...