Hi there!

[jeother]

Hello everyone! Just wanted to introduce myself. I am 34, married momma to 3 beautiful kiddos...13 and 8 year old girls and a 2.5 year old pistol of a boy. He is special needs because he was trached at 3 months due to complications from being a 30 week preemie. My road to diagnosis is a long and confusion one. Long story short, I have a saddle nose deformation because my son headbutted me. I went to the ENT because my septum is deviated and was having sinus issues. The doctor dug a little deeper and referred me to some specialists where after several rounds of bloodwork, sinus surgery, scopes, cat scans, biopsies and X-rays they believe I have Wegener's. Also in the running was Relapsing Poly Chondritis. Thankfully, become of my nose injury, they believe it was caught very early. I have no granulomas in my lungs, no kidney issues. My biggest complaint is the shortness of breathe. My airway is reduced about 40% due to inflammation so just walking up the stairs causes me to need a break. I start rituxan infusions on Wednesday. I will have 4 weekly infusions. I've been on 10mg prednisone daily for the last several weeks while waiting for insurance approval on rituxan. Looking forward to reading through the forums and learning more about this complicated disease process.

[Pete]

Hi Jeother,

You may also want to check with a pulmonologist about the possibility of subglottal stenosis - a narrowing of the airway just below the mouth. Hate to alarm you to the possibility, but several folks on here deal with it. Good luck with the rituxan. Hope it quells the symptoms.

[Gab122]

Hi Jeother, I'm a newbie too. Just diagnosed 8/1/16 - I presented with 3 months of ear pain/ pressure/fluid. By the time I started extra GPA (weg) tests in late July my breathing was uncomfortable. Ct scan showed I had lung granulomas. No kidney trouble thou. I'm on 60 prednisone and have a set of ritux infusions (first done) that are two weeks apart. I'm confused a bit why I am not on 4 weekly ritux but will ask at my Mass Genl rheumatology follow up on wed. I'm still learning a lot about the disease like you. I'm married with a 12 year old daughter. How's your older one doing? Mine is well, we told her meds stop the disease activity. (Hoping for no infections while I'm immune suppressed and to get to and stay in remission) Daily questions arise. This a great forum! Sorry you are facing this disease with us all.
God bless,
Gab

[jeother]

Hi Pete! Thanks for your response. No alarm at subglottic stenosis, so no worries. ☺️ I am actually very familiar with it. My son has a grade 3 subglottic stenosis and has a trach as a result. I've had to airway scopes, one under anesthesia and the doctors both said that it looked more like edema than scarring and, at this point, aren't concerned with subglotic stenosis. Thanks for the well wishes! I'm hoping I do well with the infusion!

[jeother]

Hi Gab! Glad you got a quick diagnosis. Are you feeling better after your infusions? My older daughter is coping pretty well. She is a tough kid and has had to deal with a lot worse with my son. We haven't gotten into how serious it can get. She really only knows that my breathing issues and some of my pain issues are from this and will hopefully get better after treatment. Best of luck to you!

[Alysia]

welcome to the forum Jeother. I am sorry for your son's struggles at such a young age. sending prayers for him and for you.....
about half of us have saddle nose, so I guess you would have get it even without your son's headbutting...
sounds like you are getting a good treatment. there is sub forum here about tracheal stenosis and related issues. check it.

[annekat]

Welcome, Jeother. Sorry you have need to be here, but Gab is right, this is a great forum. It's been a daily, important part of my life since April 2011, when I was diagnosed. I never got RTX, as it was just starting to be approved and used more around that time, and I did OK with the other standard meds being used along with prednisone. I've had lung, sinus, and ear involvement, but am pretty well stabilized and hoping mainly to be able to taper lower on the pred without flaring... I'm at 10mg/day. Taking methotrexate for maintenance now but started with cyclophosphamide, which worked well for me. If things get really bad for me again someday, I suppose RTX will be the next step. Keep us informed on how things go for you!