Funny question

[Gab122]

Ok, so I'm wondering if this is just me... Or if it's a Weg GPA thing.

Prior to this disease I never could feel sensations inside my ears or nose unless I had a cold or an infection.

Since Weg GPA, I have sensations inside my ears and nose that to me are very hard to describe. To me it feels like "growing" or simply "activity". Faintly similar to the sensation you get when you use afrin nose spray and it opens up your sinuses. Or if you smell something minty, then inhale, your sinuses feel "open".

On the higher doses of prednisone I felt less sensation and less often. Now that prednisone is tapering, I feel more of this sensation. Is that a sign of GPA activity?

Do any of you feel a sensation in your nose or ears? How would you describe it?

Thanks
Gab

[Dirty Don]

WG is about inflammation...sounds like swelling is happening in your sinus area. Most of my lasting damage is in my sinuses, hear the ocean ALL the time! If your pred is dropping, damaged effects will be more apparent. Best to you.

[Alias]

During the worst part of my acute phase I had a horrible sensation of tiny bugs crawling up my nasal passages and sinuses. Since treatment, that has subsided, but I am left with "hearing the ocean all the time" as don says, as well as occasional spikes in ear pressure and pain.

[Gab122]

Thank you for replying Don and Tom. I've heard sporadic sounds in my ears but nothing continuous. Ear pain and drainage were my presenting symptoms. I was on vicadin and torodol and still in pain. It was the 60 mg prednisone that stopped the pain. I have tubes in my ears and since the prednisone taper started, I now feel/hear a cavernous echo-y sensation/sound when I hear myself talk.

My sinuses never stopped draining completely on prednisone and I have had blood, crusts, and thicker mucous produced too at times. I don't know as I'd call it a bug crawling sensation but that does definitely sound like "activity" so maybe we have experienced something similar. Swelling of the tissues in my ears and sinuses could also feel like activity I suppose. So maybe that is what's going on.

I have a follow up ear exam scheduled for mid November and at my rhuem appt last week they said they want me to see an ENT again - I have seen an eye dr and an ear dr but this will be first nose appt since my Weg GPA Dx.

Thx again for your input!