Newbie :)

[ghostofachance13]

Hello,

I just recently joined the forum but I've been lurking for the past year & thought I would introduce myself. I was diagnosed with GPA in Dec 2016 after 3 years of symptoms. I was finally diagnosed with subglottis stenosis which then led to the diagnosis of GPA. I've had the surgery for the stenosis twice this year & it appears to be narrowing again. I have an excellent ENT in Toronto who is very familiar with Wegener's patients. He in fact referred me to the rheumatologist that diagnosed me. I'm currently on Imuran, Prednisone & just finished Rituximab infusions one month ago. Since the Rituximab I've had worsening of numbness in my hands & feet & dizziness. Has anyone else experienced this with Rituximab? My rheumatologist says it's not related.
Any info would be much appreciated.

Jacqueline

[drz]

GPA can cause neuropathy or make it worse for those already have it.

[LisaT]

Hi Jacqueline, I'm afraid I don't know the answer to your question, but just wanted to ask if you live in Toronto and whether your ENT is at Mount Sinai... I'm in BC but I visit Toronto quite a bit and I saw some of the doctors there for a second opinion. I also have subglittoc stenosis and I thought if I ever required the surgery I might have it there.

[ghostofachance13]

Hi Lisa,

I live just outside Toronto & I do go to Mt Sinai for my surgeries & to see my rheumatologist. They have a vasculitis clinic there. My ENT is Dr Eric Monteiro & he's been wonderful & I would highly recommend him. I feel so lucky after reading some of the stories on here.
How long have you had GPA?

[LisaT]

I was diagnosed in 2013 but my nose and throat problems started many years before. In 2010 I was diagnosed with rheumatoid arthritis and it's only been since I got subglottic stenosis in 2013 that the doctors started saying wegeners. They had considered it before but not diagnosed it. I'm ANCA negative so was finally diagnosed based on symptoms.

[ghostofachance13]

I am ANCA negative too. Was having breathing problems for 2-3 years before I finally got an ENT to listen to me & she did a CT of my throat & found the stenosis. I'd also had frequent nose bleeds & scabbing in my nose & a perforated nasal septum. I just had my Rituximab in mid August & was exhausted by it too. I also had swelling in my throat during the first infusion & had the extra doses of Benadryl & steroid.
I'm enerally very fatigued from the Wegener's all the time & don't get much done. I'm back to work but finding it difficult to work full time hours. It's very frustrating.

[luan22]

hello, i am also a new member, i would love to listen to people's stories

[MikeG-2012]

... I'm ANCA negative so was finally diagnosed based on symptoms.

I haven't had a positive ANCA since diagnosis in 2012--even when I was in the middle of a SERIOUS sinus flare-up in 2013. It's been negative all along. Just because its an ANCA Associated Vasculitis (AAV) does not mean that a positive ANCA is the only way to determine disease or when a flare-up is happening. I learned the hard way, and I have no lining in my sinuses to thank for it.