Autoimmune Retinopathy

Posted by Pedie @pedie, May 8, 2019

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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This is Pete. My fiance Mitchie has just been diagnosed with Autoimmune Retinopathy. We are terrified to say the least. After seeing several retina specialist, blood test, complete workup MRI with contrast to eliminate MS the final diagnosis has arrived.We Are told that its usually from colon cancer in women at her age group 55. From my research its an extremely rare disease. Can anyone please chime in on what we are to expect in the future?

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@mitchieandpete

This is Pete. My fiance Mitchie has just been diagnosed with Autoimmune Retinopathy. We are terrified to say the least. After seeing several retina specialist, blood test, complete workup MRI with contrast to eliminate MS the final diagnosis has arrived.We Are told that its usually from colon cancer in women at her age group 55. From my research its an extremely rare disease. Can anyone please chime in on what we are to expect in the future?

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Hello, @mitchieandpete. Welcome to Mayo Clinic Connect. Sounds as though you are your fiance's advocate with her autoimmune retinopathy, which is great. It also appears that you two have been very thorough in consulting with specialists to get a diagnosis for her.

Hoping that @imallears @cehunt57 @pedie and @johnbishop will have some input for you on what to expect for the future with this disease.

Will she be undergoing screening for colon cancer, then? What would you say is most terrifying about the autoimmune retinopathy diagnosis for you two right now?

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@lisalucier

Hello, @mitchieandpete. Welcome to Mayo Clinic Connect. Sounds as though you are your fiance's advocate with her autoimmune retinopathy, which is great. It also appears that you two have been very thorough in consulting with specialists to get a diagnosis for her.

Hoping that @imallears @cehunt57 @pedie and @johnbishop will have some input for you on what to expect for the future with this disease.

Will she be undergoing screening for colon cancer, then? What would you say is most terrifying about the autoimmune retinopathy diagnosis for you two right now?

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@lisalucier
Hi,
Just to clear up, I have no experience with autoimmune retinopathy. I have had a detached retina 25 years ago and currently have macular edema which is being treated with Avastin injections . Avastin is used as an off label drug meaning it was originally used for cancer treatment but has been used successfully for macular edema and is one of the several drugs currently used by eye specialists to treat the edema.

FL Mary

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@mitchieandpete

This is Pete. My fiance Mitchie has just been diagnosed with Autoimmune Retinopathy. We are terrified to say the least. After seeing several retina specialist, blood test, complete workup MRI with contrast to eliminate MS the final diagnosis has arrived.We Are told that its usually from colon cancer in women at her age group 55. From my research its an extremely rare disease. Can anyone please chime in on what we are to expect in the future?

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Hi Pete @mitchieandpete, I would like to add my welcome to Connect along with @lisalucier and other members. Thank you for being an advocate for your fiance. I have no experience with autoimmune retinopathy but found some articles that may provide some information for you if you have not already seen them.

Diagnosis and Management of Autoimmune Retinopathy
https://www.aao.org/eyenet/article/diagnosis-and-management-of-autoimmune-retinopathy

Immune Cell Infiltration Into the Eye Is Controlled by IL-10 in Recoverin-Induced Autoimmune Retinopathy
https://pubmed.ncbi.nlm.nih.gov/30635390-immune-cell-infiltration-into-the-eye-is-controlled-by-il-10-in-recoverin-induced-autoimmune-retinopathy/

Non-paraneoplastic autoimmune retinopathy: multimodal testing characteristics of 13 cases
https://joii-journal.springeropen.com/articles/10.1186/s12348-019-0171-1

If you are not familiar with Google Scholar (https://scholar.google.com/), it's a great tool for finding the latest medical research type of information. You can sort the search results by year. Hoping another member with experience with autoimmune retinopathy can provide you with some more information.

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