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Oh Thank you, CapeKay!! This is EXACTLY what he must have. You described it perfectly. Thank you for the name of it, the references, and for the patulend website. I am definitely going to have my...

Thank you J@$ON! I am sorry about the ringing - I will definitely swing back if/when we get a diagnosis...

Thank you very much for your response. Yes it isn't precisely an echo. He had a CT scan and they didn't say anything about an open Eustachian tube, but I will have him ask his ENT because it does...

Does anyone have an echoing in the ear? What do you do about it? My husband has it and it is so severe that he doesn't feel comfortable talking because he just hears himself. He has tried different...

Thank you so much, Kathy. That is very helpful information because we were having trouble confirming that this was in fact a symptom of GPA. His rheumatologist is at HSS in NYC but we also consulted...

Oh that is very interesting, Kathy. I am going to ask his doctor if it could be that - it looks like the treatment is the same as what he has been receiving for GPA (steroids), but it also looks like...

Has anyone tried acupuncture for alleviation of symptoms or help in any way?

Thank you, Pete! That is helpful - because you can start to wonder when you might ever feel better again. He is on 15 mg of Prednisone, but he has been on it more than a month, and the Tavneos is...

Hi all. We are new to this group. My husband was diagnosed with GPA in February. He is taking Tavneos and Prednisone and has had 2 infusions of Rituximab. His main symptoms were sinus and ear...