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Hi all,
Like many, I have to begin my introduction post with tremendous gratitude to all of you, and especially to Rebecca, for all of the insights, feelings, successes, and failures posted here. Having the DEZ and the forums as a resource has been a tremendous help in coping with DES, for me, for my family, and even in the way I explain the condition to others.
This post is incredibly long, but I hope that it may serve as a resource to someone out there, even if just to say--hey, someone ELSE tried that remedy and it burned/helped/didn't do anything.
I'm a 27-year-old male with, unfortunately, pretty bad vision. (My prescription was about -10.5 in both eyes in contacts.) I began wearing soft contacts around age 9 or 10 and was told that I tolerated them very well for someone so young. I wore them all day seven days a week, took them out at night, and never really had much trouble--allergies occasionally in the spring or once in a while I would overwear them, but that always resolved in a few days and only occurred a handful of times over 15 or so years.
Fast forward to May 2011. Following a long red-eye flight, my eye was sore and red. I wore my glasses during daylight some of the time--a first in many years--and wore my contacts the rest of the time. After a three or so day trip, I came back to Washington, DC area. It's a sign of how well my eyes were doing that I didn't have an optometrist or ophtho here. For years, I had just gotten my doctor at home (New York area) to refill my prescription and would see him for yearly checkups during the holidays.
My optometrist looked at my eyes and immediately noticed that they were inflamed and dry. I didn't know this would be significant at the time, but he mentioned my TBUT was about three seconds. He told me to get out of contacts and to start Zylet with a taper regimen of about 10 days. I did as he directed, went back in a couple of weeks, and my eyes seemed to clear up. Off the Zylet and back into the contacts, with TBUT of about six seconds and a warning to cut way back on contact lens wear.
Throughout the summer of 2011, my eyes occasionally flared up. At the doctor's direction, I went back on Zylet once more for about a week, and it worked again. As long as I kept contact lens wear to a few hours a week, exercise or outdoor time, I was seemingly stable. I saw an ophtho who agreed with the optometrist--nothing significant, just dryness associated with contacts. Even during this period--August and September of 2011--I noticed some inflammation at times. I was, for the beginning of the summer, mostly using preserved artificial tears (!!--I say with chagrin now). The optometrist, at some point, corrected me on this point and suggested the varying types of preservative-free tears, and by the end of the summer, when I occasionally needed the artificial tears, I was using preservative free--Refresh Plus, mostly.
During the fall, still noting some irritation, I tried Restasis for sixty days. No improvement and just a lot of burning when I put it in. I stopped by mid-November 2011. During this time, I was mostly stable--able to wear contacts four-five hours a week, sometimes with dryness and burning, but most of the time things were semi-okay.
Here's a timeline of where things went from there:
November 2011-mid February 2012: Using artificial tears, mostly Refresh Plus p/f with sometimes Systane gel p/f at night. Only a handful of times a day. Discomfort mostly stable--some "bad days" but eased by artificial tears. Still wearing contacts 2-3 hours/week for sports.
January 2012: Eased off of prescription allergy medication to see if was causing dry eye. No change in symptoms.
Mid-February 2012: Following night of poor sleep and early flight, eyes are markedly worse. Noticing halos around lights, mostly at night, increased discomfort (burning/itchy sensation) in both eyes during day. Use of artificial tears increases. Noticing more floaters (always had them, only noticed them very rarely.)
Early March 2012: Appointment with new ophtho (same practice as first, who left practice). She notes that eyes are very dry although "structurally okay." She recommended trying different allergy drops and increasing use of artificial preservative-free tears. (I regret that I didn't know then to ask more questions or pay more attention to my symptoms!)
March 2012: Trying various allergy drops--Pataday, Alrex, Alaway. None seem to make much difference. Artificial tear usage increases to approximately every hour.
Early April 2012: Ophtho appointment. Same as March--eyes dry but structurally okay. She installs semi-permanent plugs in both lower ducts, which I tolerated well but didn't believe caused any change in symptoms.
April 2012: Eyes still the same--using p/f drops, mostly Systane or Refresh Plus, about every hour. Eyes are uncomfortable but okay-ish when I am using the drops.
Very end of April 2012: Ophtho notices lack of improvement. I start Lotemax 4x/day for two weeks, then 2x/day for six weeks, along with Restasis 0.05% 2x/day and continued use of preservative-free drops. Also added fish oil 1000mg 3x/day.
April and May 2012: Eyes mostly steady at uncomfortable yet manageable level. Continued sensitivity to light and discomfort. Some “bad days.” Followed taper regimen with Lotemax and continued to use Restasis. Artificial tears approximately once an hour. Begin taking fish oil 3x 1000mg per day.
Mid-June 2012: Ophtho appointment. From her perspective, thinks eyes seem mostly steady.
Early July 2012: Eyes begin to get noticeably worse. Light sensitivity increases and dry sensation increases to very painful levels. Around this time, using only Restasis and occasionally Lotemax on very worst days. Artificial tears usage increasing to sometimes every 10-15 minutes. (Again--this is right around when I found DEZ and realized this was bad! Regrettably, I didn't pay enough attention to my eyes to know exactly what was going on on my eye.)
July 2012-early September 2012: On Restasis 2x/day, fish oil, and occasional Lotemax for flareups. Throughout I had occasional appointments with the ophtho, who, at each appointment, reassured me that my cornea is still healthy. (Apparently, I am good at keeping it wet.) During this time, I tried unsuccessfully:
I added in Tranquileyes at night around this time, with p/f Systane as needed--it seemed to help a little.
My ophtho and optometrist, who I saw for my annual checkup, both recommended I see a dry eye specialist. I made an appointment in mid-August for early September and am seeing a dry eye specialist at a major medical facility in the greater DC area, someone my ophtho recommended.
Early September 2012: Specialist appointment. Inserts semi-permanent plugs in upper puncta. Schrimer’s scores of 8 and 7 and “definite” dry eye and some blepharitis. Says cornea is healthy but likely only my steady use of lubricants keeping me from severe damage. Begin: Restasis 4x/day; hot compress 5 minutes, 2x/day; lid scrub, 1x/day; FML ointment at night; immediate stopping of all Lotemax.
September: No real improvement in symptoms; in fact, burning seems to increase with the increased use of Restasis. I did notice that my worst vision symptoms eventually shifted from daytime to nighttime light sensitivity. The burning sensation is fairly constant and quite unpleasant.
Late September 2012: Specialist appointment. Notes that upper plugs are markedly helping tear retention and that I am likely suffering from MGD. In doc's words, my glands are producing "toothpaste" instead of oil. Starts doxycycline 100mg 2x day, to be tapered to 1x day in three weeks. Discontinue FML ointment and begin using a nighttime lubricant ointment (thanks to DET, I am mostly using Systane, which I seem to tolerate decently). The doctor also ran a battery of blood tests looking for autoimmune conditions. Results are due in about 10 days.
Only two weeks into the doxy, it's tough to see any improvement, though I'm hoping. Right now I do have burning sensation most of the day, though I've almost completely lost the ability to distinguish Restasis burning from dry-eye burning. I suspect the plugs keep the Restasis on my eye that much longer, and I can see that--there's a tear film on my eyes almost all the time. The quality must just be poor. Because I don't know whether Restasis has helped my aqueous production, I am loath to stop it until I know whether the doxycycline makes a difference.
My current daily regimen:
-Restasis 0.05% 4x (we're approaching six months here... I'm getting tired of it!)
-Fish oil 3x 1000mg
-Warm compress, 2x/day (doing the Latkany, as they say)
-Lid scrub, 1x/day
-Systane Ultra P/F and Refresh Plus P/F as needed (mostly every 45mins-hour now, though I am trying to cut down when possible)
-Systane ointment & Tranquileyes at night
-Use of Evader I Over-Rx whenever possible (they're ugly, but especially when I'm outside, they make a HUGE difference. the double-whammy of poor vision & dry eye).
As far as what's causing this? Awaiting the blood test results, I guess. Also considered possibilities: starting contact wear too young; overwear of contacts; bad luck? I thank God that I didn't have PRK when I was 20 and my optometrist urged me to consider it.
Thanks again to all for the support you've unwittingly been offering me. I look forward to offering my insights when possible.
Like many, I have to begin my introduction post with tremendous gratitude to all of you, and especially to Rebecca, for all of the insights, feelings, successes, and failures posted here. Having the DEZ and the forums as a resource has been a tremendous help in coping with DES, for me, for my family, and even in the way I explain the condition to others.
This post is incredibly long, but I hope that it may serve as a resource to someone out there, even if just to say--hey, someone ELSE tried that remedy and it burned/helped/didn't do anything.
I'm a 27-year-old male with, unfortunately, pretty bad vision. (My prescription was about -10.5 in both eyes in contacts.) I began wearing soft contacts around age 9 or 10 and was told that I tolerated them very well for someone so young. I wore them all day seven days a week, took them out at night, and never really had much trouble--allergies occasionally in the spring or once in a while I would overwear them, but that always resolved in a few days and only occurred a handful of times over 15 or so years.
Fast forward to May 2011. Following a long red-eye flight, my eye was sore and red. I wore my glasses during daylight some of the time--a first in many years--and wore my contacts the rest of the time. After a three or so day trip, I came back to Washington, DC area. It's a sign of how well my eyes were doing that I didn't have an optometrist or ophtho here. For years, I had just gotten my doctor at home (New York area) to refill my prescription and would see him for yearly checkups during the holidays.
My optometrist looked at my eyes and immediately noticed that they were inflamed and dry. I didn't know this would be significant at the time, but he mentioned my TBUT was about three seconds. He told me to get out of contacts and to start Zylet with a taper regimen of about 10 days. I did as he directed, went back in a couple of weeks, and my eyes seemed to clear up. Off the Zylet and back into the contacts, with TBUT of about six seconds and a warning to cut way back on contact lens wear.
Throughout the summer of 2011, my eyes occasionally flared up. At the doctor's direction, I went back on Zylet once more for about a week, and it worked again. As long as I kept contact lens wear to a few hours a week, exercise or outdoor time, I was seemingly stable. I saw an ophtho who agreed with the optometrist--nothing significant, just dryness associated with contacts. Even during this period--August and September of 2011--I noticed some inflammation at times. I was, for the beginning of the summer, mostly using preserved artificial tears (!!--I say with chagrin now). The optometrist, at some point, corrected me on this point and suggested the varying types of preservative-free tears, and by the end of the summer, when I occasionally needed the artificial tears, I was using preservative free--Refresh Plus, mostly.
During the fall, still noting some irritation, I tried Restasis for sixty days. No improvement and just a lot of burning when I put it in. I stopped by mid-November 2011. During this time, I was mostly stable--able to wear contacts four-five hours a week, sometimes with dryness and burning, but most of the time things were semi-okay.
Here's a timeline of where things went from there:
November 2011-mid February 2012: Using artificial tears, mostly Refresh Plus p/f with sometimes Systane gel p/f at night. Only a handful of times a day. Discomfort mostly stable--some "bad days" but eased by artificial tears. Still wearing contacts 2-3 hours/week for sports.
January 2012: Eased off of prescription allergy medication to see if was causing dry eye. No change in symptoms.
Mid-February 2012: Following night of poor sleep and early flight, eyes are markedly worse. Noticing halos around lights, mostly at night, increased discomfort (burning/itchy sensation) in both eyes during day. Use of artificial tears increases. Noticing more floaters (always had them, only noticed them very rarely.)
Early March 2012: Appointment with new ophtho (same practice as first, who left practice). She notes that eyes are very dry although "structurally okay." She recommended trying different allergy drops and increasing use of artificial preservative-free tears. (I regret that I didn't know then to ask more questions or pay more attention to my symptoms!)
March 2012: Trying various allergy drops--Pataday, Alrex, Alaway. None seem to make much difference. Artificial tear usage increases to approximately every hour.
Early April 2012: Ophtho appointment. Same as March--eyes dry but structurally okay. She installs semi-permanent plugs in both lower ducts, which I tolerated well but didn't believe caused any change in symptoms.
April 2012: Eyes still the same--using p/f drops, mostly Systane or Refresh Plus, about every hour. Eyes are uncomfortable but okay-ish when I am using the drops.
Very end of April 2012: Ophtho notices lack of improvement. I start Lotemax 4x/day for two weeks, then 2x/day for six weeks, along with Restasis 0.05% 2x/day and continued use of preservative-free drops. Also added fish oil 1000mg 3x/day.
April and May 2012: Eyes mostly steady at uncomfortable yet manageable level. Continued sensitivity to light and discomfort. Some “bad days.” Followed taper regimen with Lotemax and continued to use Restasis. Artificial tears approximately once an hour. Begin taking fish oil 3x 1000mg per day.
Mid-June 2012: Ophtho appointment. From her perspective, thinks eyes seem mostly steady.
Early July 2012: Eyes begin to get noticeably worse. Light sensitivity increases and dry sensation increases to very painful levels. Around this time, using only Restasis and occasionally Lotemax on very worst days. Artificial tears usage increasing to sometimes every 10-15 minutes. (Again--this is right around when I found DEZ and realized this was bad! Regrettably, I didn't pay enough attention to my eyes to know exactly what was going on on my eye.)
July 2012-early September 2012: On Restasis 2x/day, fish oil, and occasional Lotemax for flareups. Throughout I had occasional appointments with the ophtho, who, at each appointment, reassured me that my cornea is still healthy. (Apparently, I am good at keeping it wet.) During this time, I tried unsuccessfully:
- Lacrisert (seemed to "work" in producing tears but induced horrible burning sensation that got worse the longer I used them)
- FreshKote (same as Lacrisert--only change in symptoms was an increased burning sensation)
I added in Tranquileyes at night around this time, with p/f Systane as needed--it seemed to help a little.
My ophtho and optometrist, who I saw for my annual checkup, both recommended I see a dry eye specialist. I made an appointment in mid-August for early September and am seeing a dry eye specialist at a major medical facility in the greater DC area, someone my ophtho recommended.
Early September 2012: Specialist appointment. Inserts semi-permanent plugs in upper puncta. Schrimer’s scores of 8 and 7 and “definite” dry eye and some blepharitis. Says cornea is healthy but likely only my steady use of lubricants keeping me from severe damage. Begin: Restasis 4x/day; hot compress 5 minutes, 2x/day; lid scrub, 1x/day; FML ointment at night; immediate stopping of all Lotemax.
September: No real improvement in symptoms; in fact, burning seems to increase with the increased use of Restasis. I did notice that my worst vision symptoms eventually shifted from daytime to nighttime light sensitivity. The burning sensation is fairly constant and quite unpleasant.
Late September 2012: Specialist appointment. Notes that upper plugs are markedly helping tear retention and that I am likely suffering from MGD. In doc's words, my glands are producing "toothpaste" instead of oil. Starts doxycycline 100mg 2x day, to be tapered to 1x day in three weeks. Discontinue FML ointment and begin using a nighttime lubricant ointment (thanks to DET, I am mostly using Systane, which I seem to tolerate decently). The doctor also ran a battery of blood tests looking for autoimmune conditions. Results are due in about 10 days.
Only two weeks into the doxy, it's tough to see any improvement, though I'm hoping. Right now I do have burning sensation most of the day, though I've almost completely lost the ability to distinguish Restasis burning from dry-eye burning. I suspect the plugs keep the Restasis on my eye that much longer, and I can see that--there's a tear film on my eyes almost all the time. The quality must just be poor. Because I don't know whether Restasis has helped my aqueous production, I am loath to stop it until I know whether the doxycycline makes a difference.
My current daily regimen:
-Restasis 0.05% 4x (we're approaching six months here... I'm getting tired of it!)
-Fish oil 3x 1000mg
-Warm compress, 2x/day (doing the Latkany, as they say)
-Lid scrub, 1x/day
-Systane Ultra P/F and Refresh Plus P/F as needed (mostly every 45mins-hour now, though I am trying to cut down when possible)
-Systane ointment & Tranquileyes at night
-Use of Evader I Over-Rx whenever possible (they're ugly, but especially when I'm outside, they make a HUGE difference. the double-whammy of poor vision & dry eye).
As far as what's causing this? Awaiting the blood test results, I guess. Also considered possibilities: starting contact wear too young; overwear of contacts; bad luck? I thank God that I didn't have PRK when I was 20 and my optometrist urged me to consider it.
Thanks again to all for the support you've unwittingly been offering me. I look forward to offering my insights when possible.
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