new member

[mama2005]

Hi,
I am a mother of two young children and am twenty four years old. I was diagnosed with WG in November of 2010. I spent a year going to my family physician who kept changing my antibiotics until she sent me to an ENT. The ENT took one look up my nose and knew there was something wrong. after two sinius surgeries they had enough to diagnose me with WG. I have a perforated septum, saddle nose, subglotitc stenosis, 65% hearing loss in one ear and 85% in the other, and now they believe that there may be kidney problems also. I have had two rounds of Rituxan and on Prednisone, antibiotics. The doctor is talking steriod shots for the throat not looking foreward for those.

[pberggren1]

How are you doing now? What meds are you currently on and when was your last rtx infusion? Did you have 2 or 4 infusions? I know what it is like to have severe hearing loss like that. I am almost totally deaf. I can hear on the phone a bit but it is extremely hard to make out speech. How is your nose doing now? Has your hearing improved any? Where are you located? Do you see a Wegs Specialist?

[Chris G]

Welcome to the group mama. You'll find lots of support here.

[Sangye]

Hi mama, welcome to the group! I have the same questions as Phil and the same comment as ChrisG.

I haven't heard of steroid shots for the throat. Is that for the stenosis?

[mama2005]

Hi, I am ok not in remission and not exactly under conntrol but my doctors are working very hard. I drive about three hours to see Dr. Hoffmen at the Clevleand Clinic. He is the head of the vassculitius department there. The hearing was the biggest reason I went to the doctoors, Its very hard to do my job with the hearing loss. The doctors say the hearing is permanent and I will be getting fitted for hearing aids soon. My nose is now not only falling in the saddle but is now collpasing in at the sides and the doctor says that they wont be able to repair the damage on the inside but when I am in a strong remission he will do reconstruction on the outside. The steriod shots are for stenosis. We just found the stenosis last month and Its getting harder to breathe every day. When he found it he said that my trache was 40 to 50% closed. I see him Monday and I am guessing they will be doing another scope and then if it has worsened the doctor said he would do steriod shots. He said that by doing the shots the steroids are like crystals and help treat it longer. I had two rituxan treatments and then was just put on cytoxin and continuing prednisonne at 55mg a day. In which makes for long sleepless nights.

[Sangye]

So glad you're being treated at CC. We don't have to worry about your care!

[mama2005]

They are awsome. I am from a small town and the doctors around here have to ask you to spell it so they can look it up. I went to the ER three weeks ago not related to WG and they asked if there was any other medical issues and my husband of course pronounced and spelled it and I asked if he had heard of it and said no he was going to look it up. I would not trust anyone here with my care. the Dr's in CC are not to happy because he has traced my disease back to atleast three years ago. I spent a whole summer on antibiotics and a whole pregnancy on them and no one figured it was anything but a bad cold.

[Sangye]

It must be so frustrating for our Wegs specialists to hear day in and day out how so many of their patients were misdiagnosed and mistreated before getting proper care. I don't envy their jobs!

[JanW]

Hi, mama - I, like you have the stenosis and saddle nose and am treated by a ENT whose mentor is Dr. Hoffman, so I know what it is like to have excellent care. Welcome to our group!

[sadpixie]

Welcome to the group! I was diagnosed in late Nov/early Dec 2010 and also have two young kiddos. I have sinus involvement with major hearing loss in one ear and saddle nose. I just finished up Rituxan in March and I am currently on CellCept and Pred.