I mean WTF is going on lol!

[Guest]

I guess all I can do is laugh. I walked into the UIC eye and ear infirmary today and talked to Dr Jain. We did EVERY test humanly possible..I'll list the info here then give his diagnosis.

Pressure - left 12 right 13

MMP 9 - positive

lipid thickness - left 54 right 63

noninvasive TBUT - about 4 seconds both eyes

upper gland image - a couple glands near the outer edge of the lid were gone on both eyes, the other glands were great.

lower gland imaging - two glands were shortened in center of left eyelid, right eyelid glands are perfect.

Schirmer - left eye 3mm right eye 4mm

4 tear samples were taken and I'll know the results next month. Testing for extra cellular DNA, chemokines and cytokines

He pulled my lids back and said, you have a non classical presentation of floppy eyelid syndrome. stop the restasis because it's not working, your MMP9 is showing inflammation. So he said take 50mg doxy a day, compounded methylprednisone, serum at 50% concentration as opposed to 20%, erythromycin antibiotic ointment at night and eye shields taped to my face. He said it looked like I may have sjogrens, so he ordered that and a thyroid test.

So WTF is going on lol. How do I even proceed? Who do I believe? I guess I'm going to try the regimen and see if it helps. My gut has been telling me restasis wasn't doing much, because I would still get burning in my right eye, because it doesn't close at night. I tend to agree with this diagnosis. I'll keep everyone updated but yeah, he said I do NOT have a basement membrane dystrophy. So again, how did my corneal specialist see an "island" in my left eye and this doctor saw nothing. He used lissimine green staining, first time I've ever had that put into my eye. Again, said the cornea looked great. Everyone says my cornea looks great. Sorry I'm rambling a bit just confused.

[MGD1701]

Thanks for sharing - very thorough tests.

I wonder why they did not do osmolarity but schirmer?

Test for extra cellular DNA, chemokines and cytokines - are these to identify source of inflammation?

Rapid TUBT: did dr say possible causes??

MMP-9 positive is strong or weak positive?

Please keep us informed. Thanks.

[hopeful_hiker]

First thing I did when I got the dry eye is Sjogren’s blood work followed by lip biopsy. Then I did all possible thyroid tests. TSH is not enough.

What is floppy eyelid?

[deep_dry_eye]

If you have inflammation, I suggest you to continue Restasis and add Xiidra in. The macrolide antiobiotics he prescribed will also aid in reducing inflammation. Your corneas can look great but still experience dry eye syndrome (myself included). The fact that your TBUT is low still suggests at least some form of MGD.

You can also try AMT (Prokera), the idea is that it can help heal your nerves. I'm around 2 months post-op prokera, and I've definitely noticed some small improvements. Of course, it could also be my Restasis + Xiidra finally kicking in. I'm stopped my autologous as well.

[Guest]

Thanks for sharing - very thorough tests.

I wonder why they did not do osmolarity but schirmer?

Test for extra cellular DNA, chemokines and cytokines - are these to identify source of inflammation?

Rapid TUBT: did dr say possible causes??

MMP-9 positive is strong or weak positive?

Please keep us informed. Thanks.

Osmolarity was low and he said, it's a worthless test anyway.

Mmp9 I was just told positive, it was like a birth control stick. The line was solid.

he said my eyelid opens at night and that's what's causing this. He's testing for thyroid because that's usuallly what causes floppy eyelid syndrome.

[Guest]

If you have inflammation, I suggest you to continue Restasis and add Xiidra in. The macrolide antiobiotics he prescribed will also aid in reducing inflammation. Your corneas can look great but still experience dry eye syndrome (myself included). The fact that your TBUT is low still suggests at least some form of MGD.

You can also try AMT (Prokera), the idea is that it can help heal your nerves. I'm around 2 months post-op prokera, and I've definitely noticed some small improvements. Of course, it could also be my Restasis + Xiidra finally kicking in. I'm stopped my autologous as well.

He literally said restasis is worthless, he said methylprednisone is 100x stronger, he's compounding it for me now preservative free. Said said once we get the inflammation under control with the steroids I probably won't need restasis. Interesting how many different opinions there are.

I 100% have MGD, I produce foamy meibum. That's improved 75% though. My lipid thickness was the bottom end of acceptable so yeah, that's an issue. But the shirkers being 3mm and 4mm was insane. Just shocked how low it was. I'm going to try this regimen. Worst that happens I go back on restasis and feel better cause I just did a course of steroids. So I don't see how I could "lose" by trying this. I would LOVE to never take restasis again. There are days I take my restasis and to be honest, I think it makes things worse. I had more tears on alrex, before I started restasis. I have noticeable less tears now after 5 months on it. There were days I'd forget to take it, and my eyes felt good. Could be coincidence but I think I'm going to take this leap. This guy is a member of the dry eye workshop, he runs several clinical trials and does a lot of research. If I can't trust this guy, I don't even know man.

[deep_dry_eye]

He literally said restasis is worthless, he said methylprednisone is 100x stronger, he's compounding it for me now preservative free. Said said once we get the inflammation under control with the steroids I probably won't need restasis. Interesting how many different opinions there are.

I 100% have MGD, I produce foamy meibum. That's improved 75% though. My lipid thickness was the bottom end of acceptable so yeah, that's an issue. But the shirkers being 3mm and 4mm was insane. Just shocked how low it was. I'm going to try this regimen. Worst that happens I go back on restasis and feel better cause I just did a course of steroids. So I don't see how I could "lose" by trying this. I would LOVE to never take restasis again. There are days I take my restasis and to be honest, I think it makes things worse. I had more tears on alrex, before I started restasis. I have noticeable less tears now after 5 months on it. There were days I'd forget to take it, and my eyes felt good. Could be coincidence but I think I'm going to take this leap. This guy is a member of the dry eye workshop, he runs several clinical trials and does a lot of research. If I can't trust this guy, I don't even know man.

I disagree that Restasis is worthless. I do believe it can control and reduce inflammation. I'm more skeptical about pred, I believe it will work, but its a strong medication. Steriods should only be used short term to control inflammation.

Since you are in the US, why don't you try xiidra. I seriously believe Xiidra to be a very good medication, much better than Restasis (although I am on both Restasis and Xiidra).

I would def still do the macrolide antiobiotics, it's difficult to source that in Canada, but macrolides have good response w/ MGD. Definitely go on that for at least 2 wks. 50mg doxy is good too, my drs pulled me off doxy because they think it might interfere w/ IPL (which i disagree), but I didnt push the issue. Doxy is good w/ MGD as well.

[diydry]

It sounds like a constructive visit overall, but yeah, but it's hard to make sense of it. I don't really know enough about floppy eyelid syndrome to comment. However, I would try your doctor's regime for a month or two, see if it helps. I don't think you have much to lose, it's not like he said "Stop everything!" just the Restasis which there are many different opinions regarding its effectiveness. He probably asked you to stop it because your MMP-9 is positive, so the Restasis does not appear to be doing its intended job in reducing inflammation. I forget, have you taken doxy before? Did it help?

It sounds to me like the MGD is your main culprit. That will cause both inflammation and low TBUT. As we know both osmolarity and schirmer's tests are not that useful, so maybe you're not even that aqueous deficient. I mean, from what I can tell most people have evaporative dry eye unless they have fairly normal lid margins but still have corneal erosions and dryness, then they clearly have aqueous deficiency. This is just my understanding, I know it's all really complex.

[Guest]

It sounds like a constructive visit overall, but yeah, but it's hard to make sense of it. I don't really know enough about floppy eyelid syndrome to comment. However, I would try your doctor's regime for a month or two, see if it helps. I don't think you have much to lose, it's not like he said "Stop everything!" just the Restasis which there are many different opinions regarding its effectiveness. He probably asked you to stop it because your MMP-9 is positive, so the Restasis does not appear to be doing its intended job in reducing inflammation. I forget, have you taken doxy before? Did it help?

It sounds to me like the MGD is your main culprit. That will cause both inflammation and low TBUT. As we know both osmolarity and schirmer's tests are not that useful, so maybe you're not even that aqueous deficient. I mean, from what I can tell most people have evaporative dry eye unless they have fairly normal lid margins but still have corneal erosions and dryness, then they clearly have aqueous deficiency. This is just my understanding, I know it's all really complex.

Im with you, worst case, I go back on restasis. But trying to stop the drug and solve the reason why this is happening, has me motivated to try this.

Ive taken doxy twice, first time I was in such acute pain I don't think it did anything. The second time, took it for a few days and got the stomach flu for 5 days. Thought it was the doxy at first so I stoped taking it. So again, didn't have a chance to notice the effectiveness.

So as for the schirmer, he suspected it was wrong. When he washed my eye, he used a pipette to add a specific amount of fluid, then he retrieved it with these tiny tubes. He said, I put 50 units in and got a lot more out so you have tears. He said, we will try the schirmer again in a month and see. He didn't care about the osmolarity.

[Guest]

I disagree that Restasis is worthless. I do believe it can control and reduce inflammation. I'm more skeptical about pred, I believe it will work, but its a strong medication. Steriods should only be used short term to control inflammation.

Since you are in the US, why don't you try xiidra. I seriously believe Xiidra to be a very good medication, much better than Restasis (although I am on both Restasis and Xiidra).

I would def still do the macrolide antiobiotics, it's difficult to source that in Canada, but macrolides have good response w/ MGD. Definitely go on that for at least 2 wks. 50mg doxy is good too, my drs pulled me off doxy because they think it might interfere w/ IPL (which i disagree), but I didnt push the issue. Doxy is good w/ MGD as well.

Well, I think I'm going to stop restasis and follow this protocol for a month. So I will at least be able to report back how effective restasis was for me once this steroid cycles over.

Also, I can see why your doctor wanted you off the doxy. There is a light/sun sensitivity issue. He may just be covering his ass but I don't blame him. I think even on your end, it would just be safer to come off for the IPL sessions in my humble opinion. Then hop back on right after you're done.

[deep_dry_eye]

Well, I think I'm going to stop restasis and follow this protocol for a month. So I will at least be able to report back how effective restasis was for me once this steroid cycles over.

Also, I can see why your doctor wanted you off the doxy. There is a light/sun sensitivity issue. He may just be covering his ass but I don't blame him. I think even on your end, it would just be safer to come off for the IPL sessions in my humble opinion. Then hop back on right after you're done.

I have no doubt the steriod would feel better than the restasis, the thing is, restasis is for long term and steriod can only be used short term.

I will never be done IPL, doing it monthly-IPL

[Guest]

I have no doubt the steriod would feel better than the restasis, the thing is, restasis is for long term and steriod can only be used short term.

I will never be done IPL, doing it monthly-IPL

I think his hope is to destroy the inflammation, lower bacterial load, protect the eyes at night and see where I'm at in a month.

My assumption is that he feels that I could get better and not need an anti inflammatory drug anymore. Assuming we've targeted the correct problem. Again, he doesn't believe restasis is effective. I told him my whole history. I told him steroids worked great, I was on them for a few months not too long ago. So let's see...again, I can always jump back on restasis. However, if I could stop taking it, hat would be awesome. That's why I wish I had a TBUT from before the steroids, during the steroids, then off the steroids only on restasis. So when I was on the steroids tapering into restasis, I would wake up and yawn, tons of tears would pool up. That doesn't happen anymore, I have aqueous production, but it's lower than before restasis. I mean restasis is literally supposed to help you produce more tears. Again, I'm about to find out lol.

[deep_dry_eye]

I think his hope is to destroy the inflammation, lower bacterial load, protect the eyes at night and see where I'm at in a month.

My assumption is that he feels that I could get better and not need an anti inflammatory drug anymore. Assuming we've targeted the correct problem. Again, he doesn't believe restasis is effective. I told him my whole history. I told him steroids worked great, I was on them for a few months not too long ago. So let's see...again, I can always jump back on restasis. However, if I could stop taking it, hat would be awesome. That's why I wish I had a TBUT from before the steroids, during the steroids, then off the steroids only on restasis. So when I was on the steroids tapering into restasis, I would wake up and yawn, tons of tears would pool up. That doesn't happen anymore, I have aqueous production, but it's lower than before restasis. I mean restasis is literally supposed to help you produce more tears. Again, I'm about to find out lol.

Still curious why you're not on Xiidra ... its really working well for me. Of all the strongs, I rate Azithromycin > Xiidra > Steriods > Restasis

Are you also only IPL? You should give that a try.

[farmgirl]

I'll be interested to see what happens in a month with this new approach

[deep_dry_eye]

New article that just came out:
https://corporate.dukehealth.org/new...causes-dry-eye
http://stm.sciencemag.org/content/10/451/eaas9164.full

Basically it says dry eyes are likely an auto-immune disease, cyclosporine (restasis) is an immuno-suppressant. So I still think you should continue Restasis + Xiidra.