Possible EMBD and corneal erosions.

[Guest]

Newbie with possible EMBD and corneal erosions.
dang I lost my first post. Maybe it will show up somewhere.

Last June ran to emerg with first erosion with an ulcer. Treated with Muto128 ointment and muro drops for three months
Followed up with eye Doc not to concerned, thought it was due to my eyelashes that grow inwards. She Plucked some out.

Being telling her since 2011 about mild dry eye. Gave me paper test back then came out ok.

Told doc for past year my left eye losing vision. She said it’s fine. She’s now exploring EMBD will know this Wednesday outcome.

Mid sept brought in swim googles and showed eye doc (Thanks all for this helpful hint and more as I have been lurking) Not believing me that I really needed them when reading she gave me the paper in eye test and said your not making tears fat but only mucus.
Finally she recognized me and wrote me up for xiidra and Doxy 100 mg extreme dry eye. Filled Doxy prescription then realized I can’t take because of irritable bowel syndrome. Will talk to her about alternate drugs this wed. I heard 50 or 20 mg is just as effective. Wondering if I should try and see if it’s gut friendly at lower a dose. Any thoughts folks? Second erosion other day. Dealt with it on my own, xiidra helping a bit.

listed below and done religiously last six weeks not helping much
Doing hylo gel drops,
tranquil compress three times a day ,
omegas, vit d, luetin,
noheat/ Ac in house since last summer. Bedroom humidity 53-68 registers closed off, bowl of water by bed
severe screen time and reading decreased.
One cup coffee a week no alcohol
16 cups water day
daily outdoorwalks show help for a couple hours

tested for Sjögren last week and results discussion wed with eye doc. Negative but have dry mouth and nose so I think positive

real dilema. Nite ointment useless as eyes start sealing shut within ten min. Can’t open after two hours even with hot compress before opening eyes and hylo drops dropped in.
Transquil eyes not helpful to sleep in.
any more ideas ? Thx

[hopeful_hiker]

Hi! Welcome to the forum. You mention a test for Sjogren’s. Have you done lip biopsy yet? If you are in the US, you can also do Sjo blood test.

By paper test do you mean Schirmer’s? What’s the result?

Doxy is for meibomian glands (oily). Do you have blockage? IPL, Lipiflow, manual expression, and anti inflammatory drugs like Xiidra can help in place of doxycycline.

[MGD1701]

sjo test can detect sjogren 4.5-6 years earlier than traditional tests - only available in USA.

lid hygiene is super imporant if you apply ointment at night. if not, very bad for glands.
none of my +10 doctors told me this when I sufered rc erosion for some years.
pure HOCL like Avenova lid cleanser is effective for bacterial control.

serum tear helps with erosion.

if you are keen to know more, here is my old post
http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

[Guest]

Thx all,
hiker, yes I had a Schirmer test. She didn’t give me results but just said the only thing I was making was mucus.

I had standard Sjogren test and it came negetive, I have not heard if there is any other Sjö blood test in Canada. I doubt it and as any of the dry eye treatments are out of pocket.

Not it sure but I think my glands are atrophied.

Xiidra seems to help but not a true solution and I’m going to soon try Doxy 40 or 50 mg dose with xiidra as I asked my eye doc on Wednesday and she okd it.

MGD1701
thanks for all info. I will have to chew on the links but must limit my screen time carefully.

I was told Wednesday That I have mapdot in both eyes near the inner corners and fortunate that it’s not in Center of eye.

Serum drops are out of the question for me as they would not be covered under my plan. I have so many other health expenses totaling over ten grand a year out of pocket.

Ok last couple days I’ve had a miracle. If fact when I went in wed eye doc said im making tears although she didn’t Schirmer test me. Eyes felt so great, Which is odd because they have been torturing me daily since last June. Today there dry because I stupidly had one glass of champagne last night. However they seem to be better overall. Doc said maybe weather change as I’m doing all what I said in my original post and nothing different except when I open my eye to put drops in the morning I only pull down the lower lid to administer the drops while top lid is still stuck to eyeball.
Onward with this stupid journey.
Still need a solution to not having eyes stuck shut after ten min of closing. Eyeseals and ointment don’t work.

[hopeful_hiker]

Idryi oh, you are in Canada, too. Not the worst place to be but definitely not as advanced as US.
For Sjogren's. You can do lip biopsy (free). I did not feel a thing but it took some time to heal. I wanted a peace of mind so I opted for this procedure. I had to eat awkwardly for a week or so but I did not have to limit myself to liquid foods or anything like that.

Back in the day, Sjogren's was only linked to aqueous deficiency. Recent research shows that Sjogren's can also affect the glands. In any case, dry eye inflammation cycle (whether Sjogren's or not) does affect the meibomian glands. Many people benefit from IPL. Unfortunately, we are super behind times and it is not yet covered. Good for you for starting doxy.

For night. What about taping? I am not familiar with this technique (Dowork123 could be good to contact directly). Some people sleep in goggles (e.g. edmunder). Do you a humidifier in your room?

I hear you on the expenses... But if I could recommend one thing, it's serum. I paid about $275 for 3 months. I would not recommend getting more then 2 months worth because they lose healing properties. I know... $100 per month. Not great but maybe for at least some time? Why is not covered anyway by drug plans? I don't get the system sometimes.

[farmgirl]

Something like 75% of Sjogren sufferers test negative on the blood work it is not a good diagnostic tool. Mine was diagnosed with a lip biopsy that is more the gold standard.

[edmunder]

Newbie with possible EMBD and corneal erosions.
dang I lost my first post. Maybe it will show up

Being telling her since 2011 about mild dry eye. Gave me paper test back then came out ok.

Told doc for past year my left eye losing vision. She said it’s fine. She’s now exploring EMBD will know this Wednesday outcome.

Mid sept brought in swim googles and showed eye doc (Thanks all for this helpful hint and more as I have been lurking) Not believing me that I really needed them when reading she gave me the paper in eye test and said your not making tears fat but only mucus.

This makes me so angry. Doctors dismissing people who go to them in pain. Since 2011.

Ive seen about 10 doctors for my dry eye. A few really cared but simply didnt have any real knowledge. Most didnt care and didnt know.

2 have both, but their knowledge is still limited.

My first USA doctor told me; there’s nothing you can do other than drops. Good luck.


Why does the doctor need to wait to know if you have EMBD? Through the slit lamp they should be able to know.

[Guest]

Thx all,
hiker, yes I had a Schirmer test. She didn’t give me results but just said the only thing I was making was mucus.

I had standard Sjogren test and it came negetive, I have not heard if there is any other Sjö blood test in Canada. I doubt it and as any of the dry eye treatments are out of pocket.

Not it sure but I think my glands are atrophied.

Xiidra seems to help but not a true solution and I’m going to soon try Doxy 40 or 50 mg dose with xiidra as I asked my eye doc on Wednesday and she okd it.

MGD1701
thanks for all info. I will have to chew on the links but must limit my screen time carefully.

I was told Wednesday That I have mapdot in both eyes near the inner corners and fortunate that it’s not in Center of eye.

Serum drops are out of the question for me as they would not be covered under my plan. I have so many other health expenses totaling over ten grand a year out of pocket.

Ok last couple days I’ve had a miracle. If fact when I went in wed eye doc said im making tears although she didn’t Schirmer test me. Eyes felt so great, Which is odd because they have been torturing me daily since last June. Today there dry because I stupidly had one glass of champagne last night. However they seem to be better overall. Doc said maybe weather change as I’m doing all what I said in my original post and nothing different except when I open my eye to put drops in the morning I only pull down the lower lid to administer the drops while top lid is still stuck to eyeball.
Onward with this stupid journey.
Still need a solution to not having eyes stuck shut after ten min of closing. Eyeseals and ointment don’t work.

If this is something you may need to do forever, I would suggest buying a centrifuge and making the serum yourself. After you buy the centrifuge, it only costs a few bucks to draw the blood. Just a thought. But serum imho is necessary for your condition.

All that said, I would try to find an alternative to doxy. I think it’s necessary for you. You need to lower inflammation best you can.

good luck.