for those whose onset was sinus-related

[lovetoswim]

I've read many accounts of serious Weg onsets that began with a sinus-related issue, such as infection, cold, earaches, etc.

Had you experienced those issues prior to your sinus-related issue? (I've suffered from sinus infections, colds, and upper respiratory issues over the last 15 years. If I do have Wegs, I've been lucky so far, b/c antibiotics always worked.)

[annekat]

I never had a lot of sinus stuff, more asthma, and any of it was thought to be allergies. With what I now know was the onset of Wegs, I had the big earache followed by a string of sinus infections, for a couple years, which were attributed to allergies. I even got allergy shots for the first time, as the tests showed me allergic to a bunch of pollens and other stuff. The antibiotics worked ok, usually along with pred, but more infections would keep coming along. When I was finally dxed after lung involvement, I had a saddle nose and realized I'd had Wegs the whole time, in combination with the allergies. With treatment, things settled down slowly, but I had further extensive erosion in my nasal cavity. The Wegs meds help the allergies somewhat, and I did stop the shots, but I still have a pretty big problem with grass pollen, coming up soon, and get prescribed a steroid inhaler for the asthma from that, as well as take OTC allergy meds. I think it is pretty common for sinus Wegs symptoms to be chalked up to allergies and sinus infections.

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[lovetoswim]

Thanks, Ann. Did you wake up one day and see the change in your nose? I assume the doctors you saw never noticed a forming of a saddle nose?

[Alias]

My initial onset was ear and sinus related, and I had never experienced anything like it, other than mild seasonal allergies. When I supposedly had an ear infection prior to diagnosis it was completely recalcitrant to multiple antibiotics and only worsened until I was diagnosed and treated for GPA.

[annekat]

Thanks, Ann. Did you wake up one day and see the change in your nose? I assume the doctors you saw never noticed a forming of a saddle nose?

It was weird. No one mentioned it, not even during my overnight hospital stay, right before dx. Just a couple days later, I was feeling my nose and it didn't feel right, so I took off my glasses and looked in the mirror. What a shock. It was like it happened overnight, no warning, no pain. Maybe it had been there longer and my glasses had hidden it. It's more noticeable from the side, and I don't use mirrors much. Others have seen it happen over time and experience some pain along with it. I was doing my nasal rinses every day, had been for a couple years with all the sinus infections, so I was focusing on my nose a lot, so you'd think I would have noticed it before, or someone would have, unless it happened very quickly.

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[whatthewhat]

Our daughter had "allergies" and then the year she was getting more sick before diagnosis she had "sinus" infections a few times "because of her "allergies." I wish I could just do air quotes in person lol. Anyway, she was 14 at the time of diagnosis.

[lovetoswim]

Our daughter had "allergies" and then the year she was getting more sick before diagnosis she had "sinus" infections a few times "because of her "allergies." I wish I could just do air quotes in person lol. Anyway, she was 14 at the time of diagnosis.

I am so sorry your child is going through this. Were antibiotics given for her numerous sinus infections?

[lovetoswim]

Annekat, I missed your post. Wow, I can't believe they didn't see the change in your nose. Did you get it repaired?

[annekat]

Annekat, I missed your post. Wow, I can't believe they didn't see the change in your nose. Did you get it repaired?

No, it hasn't been repaired. I just figure it happened quickly and isn't that noticeable with glasses on. Once I saw it, I went in to my ENT, who had seen my nose many times before, and when he saw it he was sure I had Wegs and he and his nurse stayed late to do a nasal biopsy on the spot, which proved it. Then I got to show it to my pulmy, who'd also seen it many times, and he was also convinced. I truly think it happened more or less overnight!

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[mishb]

As a very young child (1 years old onwards) I was in and out of hospitals with ear, sinus and throat infections/tonsilitis.
Chronic hayfever was the diagnosis.
In my 20's I got Glandular Fever (Epstein Barr Virus/Mono), which sidelined me for a few months.
In my 30's I had persistent Conjunctivitis and throat infections
In my 40's - ear, sinus and throat infections again, that antibiotics didn't help - Wegener's (no saddle nose)
Now in my 50's - Remission

Is it possible that WG has been smoldering since a child - who knows, but I personally don't think so.

I believe, that if antibiotics are helping you, then you are probably lucky enough NOT to have Wegeners