Relieved to find this Forum

[Chrisanne]

Hello,
Boy, have I felt all alone with this painful and chronic condition. I have been dealing with dry eyes for about 2.5 years now, and I have yet to received a formal diagnosis . One ophthalmologist told me I have ocular disease. This condition is not improving, but goes through being manageable to completely unmanageable where I have to stay inside for days with compresses on my eyes. I have tried drops and prescription drops, Restatsis and Klarity-C and a few others. They are not helping. I also have plugs in the lower tear glands. The opthalmologist is now recommending blood serum drops. I directly asked him 2 times last week for a diagnosis so I can try to pinpoint the issue instead of guess and test approach. And yes, I will keep searching for a doctor who will take the time to explain the causes and treatments. Also, I just received a blood test today to rule out Sjogren's. So, yes, very happy to be able to be here to share and support. BTW, does anyone know anything about the blood serum drops? One thing for sure, the company that makes them is very interested in signing me up and wants a big payment. I would never do this without more information, and without not really understanding what specifically needs to be addressed with my eyes. Plus, I can't afford it.Thanks all for reading. Best, Chris

[Rebecca Petris]

Hi Chris and welcome!

"One ophthalmologist told me I have ocular disease. " - I'm thinking you mean ocular surface disease? I think it's actually great that they used those terms rather than the ubiquitous "dry eye" which is so meaningless.

Is there any diagnostic information you can share? I understand it's frustrating not to have a name to the condition, but descriptions or test results can sometimes be even more meaningful. Meantime though it sounds like it's having massive life impact - having to stay inside for days with compresses on? Yikes. Clearly you are very very symptomatic. I would encourage you to think of the path forward as two different parallel (possibly, but not necessarily) intersecting paths: diagnosis and treatment of disease on the one hand, and getting symptoms and life impact under control on the other.

A suggestion for future dr appointments:
1) Fill out this: https://www.dryeyezone.com/osdi
and print it out and bring it with you and ask them to put it in your file
2) Email them before the appointment, and say in the email that your priority for this appointment is to discuss the following 3 questions. Now these 3 are just examples of course
- Please clarify my diagnosis
- Please clarify how my treatment plan will address this and how/when I will know whether it's working
- Are there any other practical comfort measure you can suggest so that this does not impact my daily life so drastically?

If this is your first time connecting with others that have this condition - I'd love to invite you to our Dry Eye Happy Hour Zoom meetings! We're actually in the middle of a 'pause' but will be starting up again later this month. It's really important to be able to interact with people who have been there (or are there) and know what it's like!

Serum drops have been in use for a long time and there's a ton of good research about them. But like all things dry eye, they work for some people and not for others, and they are used for different purposes for different people too.

Hang in there, it really does get better, by the way!