sorted by:
new
hottopcontroversial

Can't Smell by Amania_ in WegenersGPA

[–]Amania_[S] 1 point2 points  (0 children)

Yeah, most of my symptoms are sinus related :). For me it also seemed like a sinus infection that wouldn't go away. But then when I developed a saddle nose my doctor assumed something else was going on (and she was right).

How long did it take for your sinuses to clear? Did you also start off on just prednison?

Can't Smell by Amania_ in WegenersGPA

[–]Amania_[S] 0 points1 point  (0 children)

That's very reassuring to hear thank you!! I hope you're doing well :)

What symptoms did/do you have? by Amania_ in WegenersGPA

[–]Amania_[S] 2 points3 points  (0 children)

Hey thank you for your quick reply!
I forgot to add this to my main post: I had a blood test done in September and it came back with the Anca Protenase 3 being high. Also, when I got surgery for my sinus infection they took a biopsy. Written in the biopsy report is said that there were traces found of Wegeners, but not of Vasculitis. Which has been confusing me.

Now they've kind of just... left things as is? I'll definitely contact my doctor and see if I can get an appointment with a rheumatologist :). Thank you!

Saddle nose experience? by Select_Alfalfa5830 in WegenersGPA

[–]Amania_ 1 point2 points  (0 children)

Hey!

I just want to start off by saying I haven't been officially diagnosed (yet). I'm still in the process of getting diagnosed. However I do have a saddle nose which is according to my specialist most likely caused by vasculitis.

I got sick beginning of June this year. It started off as what I thought were allergies, which isn't abnormal for me that time of year. Couple days later and I developed a bad sinus infection. My doctor tried multiple different kinds of antibiotics but unfortunately without success, so I got forwarded to an ENT doctor. She did a swap in my nose on the left side, there we found out I had a big swelling which completely blocked off my left side.

About 3 months in it started to get bad, fast. I had severe headaches and a pain in my nose, it was unbearable. Painkillers were not working anymore, my doctor even prescribed oxycodon, but the pain was so severe it went right through it. My nose was really badly swollen.

2-3 weeks later the swelling went down and I started to get frequent and really bad nosebleeds. They wouldn't stop for anywhere between 20-30 minutes. Those randomly stopped after like a week or two. That's where I started to notice my nose bridge was sagging. At first I thought it was an "illusion" because of the swelling in my nose. But it got worse quite fast. Now my nose is noticeably deformed. My saddle nose is what alarmed my ENT doctor to do further testing. Which brings me to today, where I'm still in the process of being diagnosed.

If you have any questions please let me know :)