Autoimmune Retinopathy

Posted by Pedie @pedie, Wed, May 8 11:04am

After 14 months of visiting doctors, my eye condition was diagnosed as autoimmune retinopathy. Unfortunately, it is an orphan disease. The doctor recommended the only treatment available, but the insurance company refuses to cover the cost because it is off-label. Any suggestions? Am told that if the disease continues to progress I will be blind.

@pedie Welcome. to our rent group. We arent Dr,s but helwhere can. I read you post above aout medicine I take it is eye drops. Have you asked Dr if there Is a generic that works a we'll talk to your Opthalmologist.

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@pedie might it be possible to appeal the decision of the insurance company?

I'd like to bring @mmk69 and @greenjeans into this discussion. While they have Central Serous Retinopathy (CSR) and not Autoimmune Retinopathy (AIR), they may have some experiences to share with you.

Pedie, what limits to your eye sight are you currently experiencing? Are there studies about the effectiveness of this off-label treatment that prove to slow progression of the disease?

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I have appealed to BC, and Shands Clinic is appealing. Because it is an orphan disease, there are few studies, but the doctors believe that the treatment will slow or stop the destruction of my retina. I am losing color vision, have lost night vision, and in certain circumstances my vision is blurry. Since this condition can lead to blindness, I am extremely concerned.

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@pedie

I have appealed to BC, and Shands Clinic is appealing. Because it is an orphan disease, there are few studies, but the doctors believe that the treatment will slow or stop the destruction of my retina. I am losing color vision, have lost night vision, and in certain circumstances my vision is blurry. Since this condition can lead to blindness, I am extremely concerned.

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@pedie I don't blame you I am concerned about my Macular Degeneration and glucoma I need to call my Dr as I was seeing waves in Left eye

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