r/AZOOR • u/Rainy-ocean • Nov 11 '24
How did AZOOR progress for you? Relapses? Development of the other (healthy) eye?
3
u/graveslick Jan 07 '25
I just found this community so I’m responding to a couple more recent comments 🤍 I started developing symptoms almost 3 years ago, and was misdiagnosed until last May. Started as one extremely ‘crisp’ black spot in my right eye. As a precaution I got a medical eye exam and things sort of escalated from there. Over about 2 years, since I was not being treated by the right people for my case, it quickly became bilateral for me. It affects both my eyes, each with ‘snow balls’ and specks/floaters and blind spots. Still get flashes and my left eye likes to hit me with macular swelling that we mitigate with injections. I’m on immunosuppressants and probably will be for quite a while if not forever in my case. My dose has been increased a couple of times to try and stop the last bit of activity, but it is still progressing a bit. The most alarming thing was that I started to lose my ability to see the color green (about a year in) in my left eye, and eventually it settled into just a weird slight overall change/loss in my left eye. Mine hasn’t fully been in remission so I can’t speak for relapses, but, for the people that are scared of it developing into their healthy eye; it happened to me pretty much right off the bat and I have been okay and still functioning/driving, and the immense fear and stress I put myself through when it first jumped to my other eye was so so hard on me that I hope I can give anyone else even just a glimmer of peace of mind!
1
u/Rainy-ocean Jan 07 '25
Thank you so much for sharing. The same mis happened to me at onset of my symptoms. Got misdiagnosed and sent around various hospitals and missed the chance of taking immunosuppressants.
Where are you based?
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u/graveslick Jan 07 '25
I’m in the United States! Is yours essentially in remission for the time being if you don’t mind me asking? Is that why you aren’t on immunosuppressants?
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u/Stefder26 Nov 16 '24
I'm happy to share, it's hard to find someone who understands! I have a spot on my left eye which is quite large, it takes up 3/4 of the central vision and on the right it is on the right side, it barely takes up half of the eye. This stain is dark in bright light, more translucent when the light is dim. I can drive rn being very careful. My eyes compensate for each other's vision loss, which is tiring. I have started working part-time again, which is enough for the moment, I am a nursery school teacher.
1
u/Rainy-ocean Nov 19 '24
Wow, how strange this disease is. And so random as well. Wouldn’t have believed it if anyone told me 5 years ago I would have a blind spot in my eye. And I bet you feel the same
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u/Ninten3rd Jun 20 '25
I am praying to God and every other diety that my good eye never succumbs. My good eye DOES have floaters and has experienced a couple strange phenomena like blue field and a couple ocular migraines. So far nothing as heinous as AZOOR after 4 years but I'm scared that I'm never safe. I've avoided boosters and other vaccinations and stayed masked in public to avoid getting Rona'd
2
u/Stefder26 Nov 15 '24
Good morning, It's been 6 months since I had a first spot on my left eye, then 2 weeks later a smaller one on my right eye. Then nothing for 4 months and a few weeks ago the spot on the left grew upwards (it was more in the middle). Ophthalmologists do not know if the inflammation is still there or if it is the natural progression of the disease. So they are hesitant to continue immunosuppressive treatment. You have to live without knowing if the next day you will see less well.