I mean WTF is going on lol!

[insidious988]

erythromycin antibiotic ointment

Did the Dr say how to apply? On the eye lids margin or into the eye?
I also got prescribed topical erythromicin now and I should put it only onto the Lids.

[deep_dry_eye]

erythromycin antibiotic ointment

Did the Dr say how to apply? On the eye lids margin or into the eye?
I also got prescribed topical erythromicin now and I should put it only onto the Lids.

Usually apply to lids, blink a lot afterwards, then it will spread.

[Guest]

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.

Thats why hes running the thyroid test and rheumatologist tests. He's looking for an autoimmune disease as well. Again, if I do have an autoimmune disease, I'll have no problem getting back on restasis...it takes roughy 110 days for the T cells to die so it may set me back but it's worth the risk imho. Because I know for a fact my biggest issue right now is MGD and sleeping eyes open. My assumption is if I can get the inflammation under control with doxy and a steroid, then fix the night sleeping, I shouldn't need an anti inflammatory anymore. I'm not a doctor, clearly, lol....so I am not sure what's going to happen after the month is over.

you want my humble, uninformed anecdotal opinion...when I was tapering the steroids, I was doing great, then I started restasis and came off the steroids. I think the steroids did all the work and restasis did pretty much nothing. I mean after the steroids is when my eyes started sticking even worse, after the steroids I had 3 erosions...I don't think restasis is doing what I think it's doing. I still have days my right eye burns like hell. And again, I can relate it directly to my eyes being open. I wake every two hours and yes, I wake with my eyes, especially the right, already open. He diagnosed floppy eyelid, which makes a lot of sense. So I'm positive about this.

[Guest]

erythromycin antibiotic ointment

Did the Dr say how to apply? On the eye lids margin or into the eye?
I also got prescribed topical erythromicin now and I should put it only onto the Lids.

He said pull down the lid and apply a small strip of the ointment inside the eye. I'm assuming this is to reduce the bacterial load and provide constant lubrication at night. I used an ointment last night just to test it out, refresh pm ointment, and I feel good. So again, very positive about this change.

[deep_dry_eye]

He said pull down the lid and apply a small strip of the ointment inside the eye. I'm assuming this is to reduce the bacterial load and provide constant lubrication at night. I used an ointment last night just to test it out, refresh pm ointment, and I feel good. So again, very positive about this change.

Macrolides usage in this case usually is not indicated for bacteria, but its to reduce inflammation.

[deep_dry_eye]

Thats why hes running the thyroid test and rheumatologist tests. He's looking for an autoimmune disease as well. Again, if I do have an autoimmune disease, I'll have no problem getting back on restasis...it takes roughy 110 days for the T cells to die so it may set me back but it's worth the risk imho. Because I know for a fact my biggest issue right now is MGD and sleeping eyes open. My assumption is if I can get the inflammation under control with doxy and a steroid, then fix the night sleeping, I shouldn't need an anti inflammatory anymore. I'm not a doctor, clearly, lol....so I am not sure what's going to happen after the month is over.

you want my humble, uninformed anecdotal opinion...when I was tapering the steroids, I was doing great, then I started restasis and came off the steroids. I think the steroids did all the work and restasis did pretty much nothing. I mean after the steroids is when my eyes started sticking even worse, after the steroids I had 3 erosions...I don't think restasis is doing what I think it's doing. I still have days my right eye burns like hell. And again, I can relate it directly to my eyes being open. I wake every two hours and yes, I wake with my eyes, especially the right, already open. He diagnosed floppy eyelid, which makes a lot of sense. So I'm positive about this.

Autoimmune tests are highly flaky. Additionally as the article noted, dry eyes is a class for autoimmune diseases, which there is no good test for (other than MM9, osmolarity which are not very high accuracy tests).

Doxy / Macrolides can control inflammation, but some drs shy away from long term usage of antibiotics. Steriods can definitely control inflammation, but they can not be used long term.

This is why I keep pushing you to do Restasis and especially Xiidra which can be used long term to control inflammation.

I have no doubt that when you're on steriods, you feel much better, and off steriods you feel much worse. However, the problem is that using strong steriods like pred can have long term consequences. The fact that steriods help you so much suggests its definitely an inflammation problem, and that you need to control inflammation. Tools to control inflammation include IPL, Xiidra, Azithromycin (Macrolides), Doxy and Restasis.

Additionally, symptomatically restasis may not be helping you much, clinically they still might. However, I do believe Xiidra is the much better drug between the two, and they operate in different ways. That's why I'm on both Xiidra and Restasis BID as they can complement each other in reducing inflammation and autoimmune response.

[Guest]

Macrolides usage in this case usually is not indicated for bacteria, but its to reduce inflammation.

Agreed, but it does both...it targets inflammation directly and indirectly as well as bacterial load.

[deep_dry_eye]

Agreed, but it does both...it targets inflammation directly and indirectly as well as bacterial load.

I actually don't buy the bacteria hypothesis . If it is caused by bacteria, after 3-5 days, any bacteria would have cleared up and there shouldn't be any more problems.

The fact that its used long term and helpful suggests its an anti-inflammatory drug as opposed to an anti-biotic drug. Especially if you use long-term and it helps -- i.e., if it was bacteria, it would have acquired resistance and stop being effective long term.

[Guest]

Autoimmune tests are highly flaky. Additionally as the article noted, dry eyes is a class for autoimmune diseases, which there is no good test for (other than MM9, osmolarity which are not very high accuracy tests).

Doxy / Macrolides can control inflammation, but some drs shy away from long term usage of antibiotics. Steriods can definitely control inflammation, but they can not be used long term.

This is why I keep pushing you to do Restasis and especially Xiidra which can be used long term to control inflammation.

I have no doubt that when you're on steriods, you feel much better, and off steriods you feel much worse. However, the problem is that using strong steriods like pred can have long term consequences. The fact that steriods help you so much suggests its definitely an inflammation problem, and that you need to control inflammation. Tools to control inflammation include IPL, Xiidra, Azithromycin (Macrolides), Doxy and Restasis.

Additionally, symptomatically restasis may not be helping you much, clinically they still might. However, I do believe Xiidra is the much better drug between the two, and they operate in different ways. That's why I'm on both Xiidra and Restasis BID as they can complement each other in reducing inflammation and autoimmune response.

I just saw my corneal and external disease specialist today and showed him what Dr Jain outlined. He agreed with everything except the frequency of the methylprednisone.

so, I have slight burning in my right eye. He said the conjunctiva is slightly inflamed, he agreed restasis is not helping. Told me to stop and as a matter of fact, said he believed long term use of restasis could cause further inflammation. I have always had bad resftims to any emulsion, retaine MGD, refresh endura and restasis all kinda bother my eye. Not to mention restasis really disrupts my tear film. I would LOVE to not take it forever. So the test begins, no restasis starting today.

he said start the methylprednisone in the right eye first because the left eye isn't really inflamed. See how I react, then add it to the left eye. He also said, use it twice a day rather than 4 times a day. He said he wanted me on doxy but I had a possible stomach issue...so he's like yes, get on the doxy and if you want to titrate up to 100mg go ahead, assuming you feel good.

Do you want to know why I anecdotally, with no medical experience, agree with this? Because I can look back and see the changes and now I can make educated guesses as to why things happened the way they did. So, the steroid taper into restasis. Here's what I think happened looking back. While I was on the steroids and adding in restasis I felt great. Of course I would, I was also producing A LOT more tears, I think because of the steroids. Well now I've been off the steroids 3 months and I'm having erosions and my eyes are dryer. So I'm pretty certain restasis is not really helping my tear production. Only based on how I feel. My eyes never stick together when I was on alrex...then I had 3 erosions on restasis...I was taking serum 8x a day too. So as my title states wtf is going on? When I look back, I'm saying, maybe if I had just taken the steroids and got my MGD under control, I wouldn't need restasis.

Like I said, I'll report back here honestly, especially if it will help someone. I signed over all my information for Dr Jain so he could use my information/samples for research purposes. I want people here to get better...there may be room for improvement but we're so afraid to change what's "working" that we sometimes don't explore new ideas/procedures/medicines etc.

[deep_dry_eye]

I just saw my corneal and external disease specialist today and showed him what Dr Jain outlined. He agreed with everything except the frequency of the methylprednisone.

so, I have slight burning in my right eye. He said the conjunctiva is slightly inflamed, he agreed restasis is not helping. Told me to stop and as a matter of fact, said he believed long term use of restasis could cause further inflammation. I have always had bad resftims to any emulsion, retaine MGD, refresh endura and restasis all kinda bother my eye. Not to mention restasis really disrupts my tear film. I would LOVE to not take it forever. So the test begins, no restasis starting today.

he said start the methylprednisone in the right eye first because the left eye isn't really inflamed. See how I react, then add it to the left eye. He also said, use it twice a day rather than 4 times a day. He said he wanted me on doxy but I had a possible stomach issue...so he's like yes, get on the doxy and if you want to titrate up to 100mg go ahead, assuming you feel good.

Do you want to know why I anecdotally, with no medical experience, agree with this? Because I can look back and see the changes and now I can make educated guesses as to why things happened the way they did. So, the steroid taper into restasis. Here's what I think happened looking back. While I was on the steroids and adding in restasis I felt great. Of course I would, I was also producing A LOT more tears, I think because of the steroids. Well now I've been off the steroids 3 months and I'm having erosions and my eyes are dryer. So I'm pretty certain restasis is not really helping my tear production. Only based on how I feel. My eyes never stick together when I was on alrex...then I had 3 erosions on restasis...I was taking serum 8x a day too. So as my title states wtf is going on? When I look back, I'm saying, maybe if I had just taken the steroids and got my MGD under control, I wouldn't need restasis.

Like I said, I'll report back here honestly, especially if it will help someone. I signed over all my information for Dr Jain so he could use my information/samples for research purposes. I want people here to get better...there may be room for improvement but we're so afraid to change what's "working" that we sometimes don't explore new ideas/procedures/medicines etc.

This is my first time hearing Restasis can cause further inflammation.

Doxy is good. Azithroymicin is better. You should consider Prokera AMT on your eyes as well, esp the ones w/ corneal erosions.

[Guest]

This is my first time hearing Restasis can cause further inflammation.

Doxy is good. Azithroymicin is better. You should consider Prokera AMT on your eyes as well, esp the ones w/ corneal erosions.

So my erosions are called micro erosions, they heal within hours and barely hurt. So say I have an erosion at 4am, if I go to see Dr Kaufman at 8am sharp, he cannot see the erosion under staining. So I'll ask about prokera, I don't see how it could be bad. However, how much does prokera differ from my serum? The point of both is to lay growth factors into the eye, so how would prokera be more beneficial. It's benign so I think it wouldn't hurt. I guess having the growth factors on the eye non stop all day is beneficial. Problem is, if you don't solve the underlying factors causing the eye issues, you'll end up with another erosion. Prokera and serum can't permenantky fix the cornea. I wish they could.

The reason I brought up the erosions though was just to say, all things being pretty much equal, my ocular surface was less healthy on restasis even while I was taking serum. Now does that mean restasis is garbage, no. But it's suspect. Oh and for xiidra, I will NEVER take that drug. I have taken it, cannot stand the side effects.

[deep_dry_eye]

So my erosions are called micro erosions, they heal within hours and barely hurt. So say I have an erosion at 4am, if I go to see Dr Kaufman at 8am sharp, he cannot see the erosion under staining. So I'll ask about prokera, I don't see how it could be bad. However, how much does prokera differ from my serum? The point of both is to lay growth factors into the eye, so how would prokera be more beneficial. It's benign so I think it wouldn't hurt.

The reason I brought up the erosions though was just to say, all things being pretty much equal, my ocular surface was less healthy on restasis even while I was taking serum. Now does that mean restasis is garbage, no. But it's suspect. Oh and for xiidra, I will NEVER take that drug. I have taken it, cannot stand the side effects.

What side effects w/ Xiidra do you experience? The taste goes away with time.

[diydry]

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.

There are a lot of good treatments here that warrant consideration. I have not tried Azithromycin, Xiidra, or IPL for example! However few if any of my doctors have recommended them to me, so it's up to me to bring it up (or find other doctors). I guess I am reluctant to keep trying more and more medications but some of these will be my next step, particularly IPL. Azithromycin I am concerned about BAK, I want to ask about a preservative-free option.

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.

I'm also currently stopping restasis since being on it for over 6 months, no clear difference (and it certainly didn't help inflammation, redness continues to be a problem even when my symptoms aren't so bad). I can always go back on it, I understand the rationale for it and it has worked for many others like deep_dry_eye. I may actually try Xiidra next instead of simply going back on the Restasis since it's a different pharmaceutical mechanism of action, so one might work if the other doesn't. BTW, steroids also were HIGHLY effective for me at strong doses and I noticed that tears would come out when I yawned and even when I woke up in the middle of the night, pretty powerful stuff! But it's not a long term option, especially the dexamethasone which I used.

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.

OK, it sounds like it's worth trying for a few months. It's hard to judge if these things work when you're in an acute state, you have to wait until you're stable. As for me, I was on it for 3 months. I didn't notice a clear difference that I could directly attribute to the doxy, but it's possible that it helped (I certainly did not get worse during that time). After getting a horrible sunburn, I asked my doctor if I could stop taking it and he said yeah, but that I might need to go back on it in another 3 or 6 months. His attitude is that doxy as well as steroids are treatments you can do in intervals or pulses if there are flareups or things seem to be getting worse. I like this approach, since taking doxy every day for the rest of my life sounds extreme and bad for my gut. Good luck!

[Guest]

diydry

Yeah, I'm not saying you shouldn't try new stuff...I think you should, assuming it's appropriate for your case. As for the BAK in azasite, you use less than a drop in/on both eyes/lashes. So out of all the preserved things you could use, it's the least damaging due to how you apply it. I would NOT drop it directly in the eye to treat MGD. It will HURT lol.

As for the restasis and xiidra, they both act on T cells. Restasis prevents new T cell formation. That's why it takes a while to work. You stop new production of T cells, however, the ones currently in your system must die off first and that takes months. Xiidra destroys active T cells, so whatever's flowing around gets wrecked immediately. Hence it's faster onset. I would use whichever one you tolerate better.

my doc feels the same way, antibiotics and steroids are necessary when things are this out of hand. But, they need to be respected.

[deep_dry_eye]

There are a lot of good treatments here that warrant consideration. I have not tried Azithromycin, Xiidra, or IPL for example! However few if any of my doctors have recommended them to me, so it's up to me to bring it up (or find other doctors). I guess I am reluctant to keep trying more and more medications but some of these will be my next step, particularly IPL. Azithromycin I am concerned about BAK, I want to ask about a preservative-free option.



I'm also currently stopping restasis since being on it for over 6 months, no clear difference (and it certainly didn't help inflammation, redness continues to be a problem even when my symptoms aren't so bad). I can always go back on it, I understand the rationale for it and it has worked for many others like deep_dry_eye. I may actually try Xiidra next instead of simply going back on the Restasis since it's a different pharmaceutical mechanism of action, so one might work if the other doesn't. BTW, steroids also were HIGHLY effective for me at strong doses and I noticed that tears would come out when I yawned and even when I woke up in the middle of the night, pretty powerful stuff! But it's not a long term option, especially the dexamethasone which I used.



OK, it sounds like it's worth trying for a few months. It's hard to judge if these things work when you're in an acute state, you have to wait until you're stable. As for me, I was on it for 3 months. I didn't notice a clear difference that I could directly attribute to the doxy, but it's possible that it helped (I certainly did not get worse during that time). After getting a horrible sunburn, I asked my doctor if I could stop taking it and he said yeah, but that I might need to go back on it in another 3 or 6 months. His attitude is that doxy as well as steroids are treatments you can do in intervals or pulses if there are flareups or things seem to be getting worse. I like this approach, since taking doxy every day for the rest of my life sounds extreme and bad for my gut. Good luck!

You can get topical Azithromycin compounded, but the delivery vehicle won't be as good.