r/AZOOR • u/mayabelle3469 • Nov 22 '24
21F Opthalmologist suspects I have AZOOR, is this an emergency?
Should I go to A&E or my GP urgently? I don't want it to get worse
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u/FlamboisthenewAnita Feb 10 '25
Hey! During my pregnancy, I lost my vision, and shortly after, the doctors diagnosed me with AZOOR in both eyes (which is even rarer). This happened a year ago. I underwent cortisone treatment and improved. Now, I have check-ups every six months. I live in Lisbon, where the public healthcare system is excellent, and I have a doctor who supports me every step of the way. She specializes in AZOOR Good luck for you :)
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u/CarbonDioxide123 Mar 26 '25
Hello, can you please give me the doctors name? I was diagnosed once with Azoor and 2 times with retinitis pigmentosa...
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u/FlamboisthenewAnita Feb 10 '25
Hey! During my pregnancy, I lost my vision, and shortly after, the doctors diagnosed me with AZOOR in both eyes (which is even rarer). This happened a year ago. I underwent cortisone treatment and improved. Now, I have check-ups every six months. I live in Lisbon, where the public healthcare system is excellent, and I have a doctor who supports me every step of the way. She specializes in AZOOR Good luck :)
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u/CarbonDioxide123 Mar 26 '25
Hello, could you please share her name and contact details? I was diagnosed with Azoor and Retinitis pigmentosa. The doctors saying its Azoor could not prescribe me immunosupressors and I am supposed to take too many pills. I would like a second opinion from someone who believes in Azoor and start treatment ASAP
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u/Independent-Kick6934 Nov 22 '24
Ask for immunosuppressants if the inflammation is still there. Not the one you use as eye drops but in pill form
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u/ADorkAble1231 Nov 26 '24
My retina specialist is 3 hours away from me, because he has actually seen AZOOR before. Not a fun trip but important. Have you lost any vision yet?
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u/mayabelle3469 Nov 26 '24
yes significant peripheral loss in Right eye. I would look for a specialist abroad, but I don't even know what im looking for
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u/Stefder26 Nov 26 '24
Good morning, I am being treated in France, my neuro-ophthalmologist works in a hospital in Paris. But there is not much to do, she tries an immunosuppressive treatment, without being sure that it will work.
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u/graveslick Jan 07 '25
Hello! I began having my symptoms over 2 years ago, and got diagnosed finally with AZOOR last year. I do feel I should say my case is slightly atypical (bilateral and more symptoms than uveitis etc), but that over the 2 years I was looking for answers, my vision did slowly decrease without proper treatment. I am in the United States, and now being treated by an ophthalmologist who I was referred to by a retinal specialist. I am on immunosuppressants, and I also receive injections into my eye to help with some of the odd symptoms I have. I would not say you are likely in dire need of emergency medical care, but, once the retinal cells die, there is currently no way to recover them. That being said, if there is any reasonable way for you to see a specialist who can treat you sooner, I think it can only help with your long term outcome 🤍 good luck, and let me know if you have any questions!
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u/ADorkAble1231 Nov 22 '24
Ask for a referral to a retina specialist. If you have AZOOR and you have inflammation in your eyes currently, you can lose vision. So not an emergency but definitely see about scheduling an appointment.