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Sudden dry eye onset + weird symptoms, 29 years old (F)

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  • Sudden dry eye onset + weird symptoms, 29 years old (F)


    My dry eye started suddenly in December 2017 and my life took a spin after the DED diagnosis. At some point I could not be in front of the computer for more than 10 minutes. Then I had crazy pain in the scleral area with no corneal staining or scratches that went away with FML and Alrex. Some days I had improvement only to be disappointed afterwards. I still don't understand what kind of dry eye I have. Some say I have blocked glands, others say I don't have that many.

    Some say I have an "inflammatory dry eye", others say I have rosacea. I have some aqueous deficiency, too, but noone said Sjogrens (lip biopsy pending).

    Anyway, I am taking an extended leave of absence from work and seeing a psychologist (severe depression and anxiety). I am in pain or some level of discomfort most days. I suppose my signs vary from are moderate but my symptoms are moderate to severe, especially in my wetter eye.

    Question 1. Pappilae/Follicles. Any ideas where that came from?

    An ophthalmologist flipped my eyelids and told me I have follicles (?) under my upper eyelids. According to her, these are allergy related. However, I found out recently that I also have had pappilae in late January. I have allergies so I know what it feels like to have a flareup. I do not feel any itching except for that one spot. Also, my eyes are not red at all with minor regular veins. I tried to research this tops and it seems that this issue could be caused by viral, bacterial, allergic, and toxic reactions to chemicals. Have you had these? Could that be the cause for my right eye pain?

    Question 2. Wrinkles/Folds on sclera

    Conjuctival wrinkles (vertical folds between the colored part of the eye and the nose). What are these? Is it typical to have such inflammation? They can be seen when my eyes are stained or if I shine light in a particular way on my eyes.

    Osmolarity is below 300, in 280's most recently.
    Tear break up time varies but the last test was 6-8 seconds (with 2-5 seconds prior to that).
    Schirmer's normal (20mm, a lot of it was reflex tearing though).
    Tear meniscus on the lower side at 0.22-0.30 mm.
    Staining on sclera, not cornea

    Mild to moderate MDG (normal oils, few blocked glands). Possible ocular rosacea (meibomitis). No corneal staining. Negative blood work for all types of autoimmune conditions (now waiting for the minor lip biopsy results).

    Current regimen
    Restasis (2 months)
    Xiidra (1 month)
    Warm compress - (8-10 minutes daily)
    Eye drops from 7 to 15 times a day (Hylo gel, Oasis +)

    Dry eye glasses (recent, very helpful in dry ventilated spaces

    I would be grateful for any info in regards to my questions!
    Last edited by hopeful_hiker; 17-Apr-2018, 19:20.

  • #2

    I'll respond since I'm a 24 year old female.

    I have Sjogrens. According to a corneal specialists at BFS and the general logic/timeline, I got it from my Mirena IUD. My blood work was negative but my biopsy was slightly positive. I have the classic symptoms but nothing else (maybe some fatigue but that could be due to the depression/anxiety that comes along with being ill). I don't know if I can answer your specific questions but I can say give you some Sjogren's related advice:

    1) You really need to push for quality Sjogren's testing. No one wanted to test me for it aside from running the standard SSA SSB blood tests, which usually don't tell you anything, and they won't think someone in their 20s will have it. My rheumatologist suggested against the lip biopsy, but I did it anyway. I found a different rheumatologist because obviously my trust in the first one had faded; she ran an MRI which also was negative and some more blood work which was again negative.

    2) Negative test results don't necessarily mean you should stop investigating Sjogrens with your doctors. As I mentioned, all of my blood work, and my MRI was negative. I'm currently getting all of my tests faxed over to the Sjogren's Center at Johns Hopkins because they are the foremost experts on the disease.

    3) Triggers can help make sense of your symptoms. My birth control set mine off. I was told any progesterone only birth control will do it. The silicone in the IUD could've also caused the issue. No one really knows. A long course of antibiotics can also trigger it in some people.

    4) If your doctors blow you off when you ask about it, find new doctors. You know when something weird is going on inside your body. Some doctors don't want to listen when you tell them something is wrong. Those are bad doctors.

    Anyway, I'm not saying that you have Sjogrens. This is just some stuff I've learned during this less than ideal journey.


    • #3
      hi Shakenbake

      Thanks a lot for sharing.

      Since all your tests (MRI, blood tests and lip biopsy) show negatives, slightly positive, how did the corneal specialists confirmed you have Sjogrens? If so, lip biopsy seems more reliable?

      Sjo blood test
      Have you heard of this? Reportedly it can detect Sjogrens approx. 4 years in advance than the normal blood tests.

      Sjogren's Center at Johns Hopkins: Grateful if you could share with us their comments. Thank you.

      Hi Hopeful_hiker

      when one has rosacea, often demodex present.

      Lid hygiene:
      you did not mention it which is pretty important. Most doctors in USA now recommend pure HOCL like Avenova to control bacterial overgrow and demodex.