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

[hopeful_hiker]

Hello!

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.


Signs
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 +)

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


I would be grateful for any info in regards to my questions!

[shakenbake]

Hi

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.

[MGD1701]

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.

[hopeful_hiker]

Shakenbake, thank you for sharing your experience! I agree, it is tricky to get the right diagnosis and treatment. My rheumatologist did not want me to do a lip biopsy because he thought it could lead to an ulcer. He was happy to put down keratoconjunctivitis sicca as my diagnosis simply based on my blood work. His reasoning is that the treatment is the same regardless of the diagnosis. Giving diagnosis on blood work alone is very risky because Sjogren’s can manifest itself in a variety of ways.


I also had hilariously disappointing ophthalmologist encounters. One refused to prescribe autologous drops because to her they were some kind of a risky novel treatment. As you may know, serum drops have been around since the 70’s. She also did not know about Xiidra. I had much better experiences with optometrists.

My lip biopsy came back negative so now I will try to figure out if I have rosacea.

[farmgirl]

Hi hopeful hiker I hope you found a different Dr

[hopeful_hiker]

farmgirl, I am in the process of trying to find an understanding ophthalmologist. Optometrists usually have great testing equipment but they can’t prescribe h things like serum drops. Fingers crossed, the one I will see in June is actually a helpful ophthalmologist.

[Adish]

@shakenbake - Hey im getting tested for sjogrens by the standard blood test - So you are basically saying it is not enough. What is needed then? How did you get a confirmation that you had it ? only Lip Biopsy? thx <3

[shakenbake]

My doctor said my Sjo test was negative.

No the standard blood test is not enough. It won’t tell you anything unless it’s positive. If it’s negative you should get a lip biopsy.

[hopeful_hiker]

Adish, I would also recommend the biopsy. I had mine done by ENT and it is not any worse than a dental procedure. In fact, tooth extraction or a bad cavity is way worse.

[farmgirl]

I had mine done and although it left a little numb spot on my lip it was totally worth it to confirm or deny the diagnosis of Sjogrens. Sadly mine was positive but at least I know. My blood wark was negative as it often is.

[shakenbake]

Just to clarify; my blood was negative but I still have the disease.

[hannahmaywils]

Hi!

I am very keen to share my story with all of you who suffer with dry eyes, its nice to to know I am not the only one out there! I am a frequent visitor of this website and have been for some time, so have decided to create an account and share my story.

It all started when I was 21 years old, in my second year at university. I was a contact lens wearer, as I played squash everyday for my university team ( I also represented wales and England!), however that all came to an end. I began having difficultly wearing contact lenses for more than a couple of hours as my eyes would feel so dry, so resulted to glasses and only wore my contact lenses when I was on the squash court. This was fine, up until the last year. I went into the chemist and brought myself some Hylo-Forte ( red ones) eye drops as my eyes were getting worse by the day. I finally reached out to my parents, to which I was referred to a specialist in Manchester. He put me on antibiotic drops at first and eye drops for a week, of course nothing changed. He then suggested punctual plugs in my lower tear ducts, so I gave them ago. I felt moisture straight away, however I was very aware of them in my eyes which unfortunately led me to have them out. Given that there was success with the plugs, in terms of an increased tear coating he suggest going ahead with permanent punctual cautery of the lower punctrum. I was of course happy to go ahead with this procedure. Everything went well, and my punctrum healed very well. However, it had been a few weeks post op, and my eyes were still dry and I was still using my drops every half hour or so. I went back and he put some punctual plugs in my upper punca. WOW! I felt amazing! Watery eyes, but not excessive! I really was not complaining about the few tears that streamed down my face. Anyway, I i felt 100% better, I was only used my drops once in the morning and that was it! I was able to wear make up again, go for runs outside, go out till late with my friends! I had my normal life back. This lasted for about 7 months. During this time, I also got an office job, it is 3-11pm shifts. All was going well for the first 3 months and then suddenly my symptoms returned. I was heart broken. My upper plugs were still in place so I was confused as to what went wrong. Anyway, I went back to my specialist in Manchester and he suggested recauterising my lower tear duct again as they apparently can re-open. I had this done, and he also put in complete ocluders plugs in my upper ( I didnt realise you could have different plugs). So i basically had no tear drainage. I felt good again, for a week. Anyway my issue now is that I have swollen eyelids ( DOES IT EVER STOP!). I have been told I have blepharitis so I am doing the warm compresses, baby shampoo etc. Not really helping if im honest. I am due to see my specialist again, although I feel he has played his part in helping my eyes. But I am desperate. So my questions are

1) Hormones? I have never looked into this side of things but have read a lot of info on this website. I have the marina coil in, does this affect dry eyes?!
2) I take all the supplements, flaxseed oil, tumerin, omega three etc. Anything else I should be aware of ?
3) HELP!

I was even considering having all of my tear ducts permanently closed, but my specialist is obviously hesitant to do this because of my age. He thinks the environment in my eyes will eventually change! I think the opposite. However, I will not give up. I will find a CURE for my eyes no matter what it takes. I feel for every one of you who suffers from dry eyes.

Its 2018, surely we are getting close now!

Anyway, feel free to ask me any questions, likewise I will be grateful to hear your feedback

[shakenbake]

Have you been tested for sjogrens?

[shakenbake]

My issues started around then due to the birth control I was using. It triggered an autoimmune response that never went away.

[Adish]

@hannahmaywils what is your diagnosis? why did your doctor recommend punctual plugs and or/ recauterising of your lower tear duct..?

And thx guys, my blood test was negative and my doctor said he didt feel like a lip biopsy was necessary. But im def gonna gonna get one any way, What can be done if you have sjogreens tho??