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Hi all! Long time lurker, first time poster. 31/female. This could go in Triumphs for sure but since I'm new I'm posting it here to give you a bit of background. I'll try to keep it short.
DISCLAIMER: I am not a Doctor and I do not advise anyone to take a drug without Doctor approval and supervision. I am discussing topical Tacrolimus here NOT systemic Tacrolimus.
I have MGD. So far as I know, I don't have Aqueous Deficiency. I don't recall my Schirmer's (done without anesthesia) but remember being told it was "great". My oil was consistently thick and white and needed a lot of pressure to expel. I always had several bumps (like little pimples) at the gland line - blocked glands I suppose? I also had signs of anterior blepharitis - very occasional itching of the lash line, once (and only once) crusting. My lashes had been thinning and grew in every direction but straight.
My symptoms began about 7 or 8 years ago. To give you a picture of my life at that point: I was anorexic and had not had a period in at least two years, I drank most days, smoked pot almost constantly and used other drugs fairly often. When I did eat, it was junk food - often sugary treats. I also never took my eye makeup off preferring to get a good smoky eye by sleeping in it.
My eyes began to burn like I was cutting onions all the time. I became very photophobic. A good sleep helped but the pain returned by afternoon. It was unbearable - extremely painful. The air in the car was a huge trigger as was any kind of shopping center, but even staying in the house I would be in agony by 1 or 2pm. I could not tolerate makeup anywhere near my eyes. I cycled through various unhelpful Doctors before realizing what I had was Dry Eyes. I almost never felt dryness, just pain. My eyelids and lid margins were red but I had barely registered that, just pain. I began washing my eyes with Theralid cleanser - I believe this is called Sterilid in the USA - and it helped a lot. But it was far from a cure. I tried hot compresses which made things worse, I had long noticed that heat of any kind made the pain unbearable. I felt good in the shower and for about a 30 minutes after, but boy, did I pay the price after that. I tried Restasis (which I gave up on after 6 weeks because I could not tolerate the redness and constant burning), Doxy (which made my skin beautiful but did not help my eyes), Pataday (no help), testosterone cream, every OTC drop on the market, etc. I went on Tobradex for a month which was a total nightmare, drying out my eyes and causing rebound redness for months despite tapering down my dosage before quitting. I also tried many supplements, Omega 3, flaxseed, NAC, etc. but with little relief. I was spiraling into a deep depression.
I had gotten healthier and healthier over the years, my periods had returned, I didn't drink or do drug often anymore, had quit makeup years ago, and practiced lid hygiene religiously, but my symptoms remained. I decided to try a strict anti-inflammatory diet - no sugar, no alcohol, minimal wheat and minimal Omega 6. This helped somewhat - more than anything before it. I stuck with it for 18 months, but I was frustrated. I still could only sit through a single Uni lecture before needing to come home and wash my eyes or rest them. Forget going out in the evening, forget wearing makeup, forget sitting near a fan, or a long car ride. I'll spare you the deep depression talk but just say this. I had experienced pain every day of my life for nearly a decade - pain that kept me from doing the things I loved and living my life fully. I could only work a few hours from home before the excruciating stinging came on. I slept 11 or 12 hours a night, simply because I could not escape the pain any other way.
I finally found a knowledgeable Doctor, but at that point I had been researching the disease for years. I was working in the scientific research field at the time and poured over every study relating to this disease, then every study relating to eye disease in general. I became especially interested in Dr. Christophe Baudoin's work regarding the inflammatory cycle. I reasoned that perhaps I, due to an unhealthy past lifestyle, had simply become trapped in a cycle of inflammation and infection - a cycle so powerful I could not heal without help. I began researching various inflammatory eye diseases (not just MGD or dry eye), and the topical version of the drug Tacrolimus came up often. It stood out to me because I had that drug. I had developed a rash on my face after a reaction to a lip balm a year earlier and had been prescribed that drug to get rid of it. After that it just sat in my medicine cabinet.
So I researched it and found it had been used successfully in a variety of eye diseases, mostly atopic in nature, but some not. I researched the cancer risk that deemed it a 'Black Box' drug and found that they came from an early animal study and that more recent human studies had not corroborated that risk. I found it to have a safer profile than steroids in many ways. I will try to attach some of these studies in a later post, although I highly recommend you do the research yourself, and not trust a stranger on the internet.
Most of the ophthalmic research done on this drug have compounded it into an eyedrop, but some use it as an ointment on the lids. I think there may be some benefit to using an ointment and don't know why the medical community is fixated on drops. The eye surface of a DE patient is extremely sensitive for one thing, increasing the risk of reaction or sensitivities. As well, for MGD patients, much of the inflammation is located in the eyelid and glands, which are easily reached via ointment. Ointment on the lids is also less likely to be washed away by reflex tears or applied incorrectly.
The commercial name is Protopic and it comes in .1 and .003 strength - I use the latter. It is officially recommended for the short term - but I am using it off-label, off course. There is no indication it is unsafe in the long-term, unlike steroids which we know are extremely detrimental in the long-term. My Doctor knows I am using this and does not find it risky.
Tacrolimus is an immune suppressant like Cyclosporin, so attention to hygiene must be maintained.
Firstly, it is much more potent than Cyclosporin. Some studies have posited that it is as much as 100 times more potent. The benefit here may be this: for people who find the burning of Restasis unbearable, Protopic may match the potency by being applied only once, at nighttime when sleep negates this transient sensation.
Secondly, although it works in a very similar way to Cyclosporin, it operates on a slightly different pathway - this is too difficult to explain here, but suffice it to say this is not simply a stronger version of Restasis.
It does burn when first used - a hot sort of feeling, not a stinging burn. This passes after a few days of usage. I wipe the tiniest amount along my upper and lower lash line. I was cautious to get it in my eyes at first and it does feel uncomfortable in the eyes, but it is not severe. I soon transitioned to using it only at night when the discomfort was not a problem. I wash my eyes in the morning to alleviate any lingering discomfort from the drug.
I used it twice a day for two weeks, then tapered down to once a day.
AND IT WORKED!
I cannot believe I am typing this right now, but it worked. Not helped, or improved, but I have NO pain anymore. I would say cured, but I will stick to calling it a remission for now. I had pretty much given up on a normal life. I was suicidal. But within two weeks of using this drug, my glands opened up and began producing clear, healthy oil. My inflammation has reduced every day. I live a normal life. I stay up late, I work on the computer, I walk in the wind, I drink (sometimes), I smoke pot (once in a while!), I eat sugar (I try not to, but I do), my eyelashes have grown back.
Darn, this is sooo long even though I tried to keep it short! Forgive my mistakes or poor explanations. I'm out now! Any questions feel free to ask BUT do not turn this into a fear-mongering session on the risks of this drug - all drugs we take have risks and Tacrolimus has an excellent safety profile when examined closely. Do NOT mention systemic Tacrolimus in this thread - I have seen this happen in another thread about this drug. No one would EVER recommend systemic Tacrolimus for DE. I know this won't work for everyone. Nothing seems too, and although there are a couple small studies showing that Tacrolimus can help AD, I have also seen people on this forum say it didn't help them at all. But, it's a drug that has actually saved my life, and has gotten relatively little attention here, so I felt I must post.
Penny
DISCLAIMER: I am not a Doctor and I do not advise anyone to take a drug without Doctor approval and supervision. I am discussing topical Tacrolimus here NOT systemic Tacrolimus.
I have MGD. So far as I know, I don't have Aqueous Deficiency. I don't recall my Schirmer's (done without anesthesia) but remember being told it was "great". My oil was consistently thick and white and needed a lot of pressure to expel. I always had several bumps (like little pimples) at the gland line - blocked glands I suppose? I also had signs of anterior blepharitis - very occasional itching of the lash line, once (and only once) crusting. My lashes had been thinning and grew in every direction but straight.
My symptoms began about 7 or 8 years ago. To give you a picture of my life at that point: I was anorexic and had not had a period in at least two years, I drank most days, smoked pot almost constantly and used other drugs fairly often. When I did eat, it was junk food - often sugary treats. I also never took my eye makeup off preferring to get a good smoky eye by sleeping in it.
My eyes began to burn like I was cutting onions all the time. I became very photophobic. A good sleep helped but the pain returned by afternoon. It was unbearable - extremely painful. The air in the car was a huge trigger as was any kind of shopping center, but even staying in the house I would be in agony by 1 or 2pm. I could not tolerate makeup anywhere near my eyes. I cycled through various unhelpful Doctors before realizing what I had was Dry Eyes. I almost never felt dryness, just pain. My eyelids and lid margins were red but I had barely registered that, just pain. I began washing my eyes with Theralid cleanser - I believe this is called Sterilid in the USA - and it helped a lot. But it was far from a cure. I tried hot compresses which made things worse, I had long noticed that heat of any kind made the pain unbearable. I felt good in the shower and for about a 30 minutes after, but boy, did I pay the price after that. I tried Restasis (which I gave up on after 6 weeks because I could not tolerate the redness and constant burning), Doxy (which made my skin beautiful but did not help my eyes), Pataday (no help), testosterone cream, every OTC drop on the market, etc. I went on Tobradex for a month which was a total nightmare, drying out my eyes and causing rebound redness for months despite tapering down my dosage before quitting. I also tried many supplements, Omega 3, flaxseed, NAC, etc. but with little relief. I was spiraling into a deep depression.
I had gotten healthier and healthier over the years, my periods had returned, I didn't drink or do drug often anymore, had quit makeup years ago, and practiced lid hygiene religiously, but my symptoms remained. I decided to try a strict anti-inflammatory diet - no sugar, no alcohol, minimal wheat and minimal Omega 6. This helped somewhat - more than anything before it. I stuck with it for 18 months, but I was frustrated. I still could only sit through a single Uni lecture before needing to come home and wash my eyes or rest them. Forget going out in the evening, forget wearing makeup, forget sitting near a fan, or a long car ride. I'll spare you the deep depression talk but just say this. I had experienced pain every day of my life for nearly a decade - pain that kept me from doing the things I loved and living my life fully. I could only work a few hours from home before the excruciating stinging came on. I slept 11 or 12 hours a night, simply because I could not escape the pain any other way.
I finally found a knowledgeable Doctor, but at that point I had been researching the disease for years. I was working in the scientific research field at the time and poured over every study relating to this disease, then every study relating to eye disease in general. I became especially interested in Dr. Christophe Baudoin's work regarding the inflammatory cycle. I reasoned that perhaps I, due to an unhealthy past lifestyle, had simply become trapped in a cycle of inflammation and infection - a cycle so powerful I could not heal without help. I began researching various inflammatory eye diseases (not just MGD or dry eye), and the topical version of the drug Tacrolimus came up often. It stood out to me because I had that drug. I had developed a rash on my face after a reaction to a lip balm a year earlier and had been prescribed that drug to get rid of it. After that it just sat in my medicine cabinet.
So I researched it and found it had been used successfully in a variety of eye diseases, mostly atopic in nature, but some not. I researched the cancer risk that deemed it a 'Black Box' drug and found that they came from an early animal study and that more recent human studies had not corroborated that risk. I found it to have a safer profile than steroids in many ways. I will try to attach some of these studies in a later post, although I highly recommend you do the research yourself, and not trust a stranger on the internet.
Most of the ophthalmic research done on this drug have compounded it into an eyedrop, but some use it as an ointment on the lids. I think there may be some benefit to using an ointment and don't know why the medical community is fixated on drops. The eye surface of a DE patient is extremely sensitive for one thing, increasing the risk of reaction or sensitivities. As well, for MGD patients, much of the inflammation is located in the eyelid and glands, which are easily reached via ointment. Ointment on the lids is also less likely to be washed away by reflex tears or applied incorrectly.
The commercial name is Protopic and it comes in .1 and .003 strength - I use the latter. It is officially recommended for the short term - but I am using it off-label, off course. There is no indication it is unsafe in the long-term, unlike steroids which we know are extremely detrimental in the long-term. My Doctor knows I am using this and does not find it risky.
Tacrolimus is an immune suppressant like Cyclosporin, so attention to hygiene must be maintained.
Firstly, it is much more potent than Cyclosporin. Some studies have posited that it is as much as 100 times more potent. The benefit here may be this: for people who find the burning of Restasis unbearable, Protopic may match the potency by being applied only once, at nighttime when sleep negates this transient sensation.
Secondly, although it works in a very similar way to Cyclosporin, it operates on a slightly different pathway - this is too difficult to explain here, but suffice it to say this is not simply a stronger version of Restasis.
It does burn when first used - a hot sort of feeling, not a stinging burn. This passes after a few days of usage. I wipe the tiniest amount along my upper and lower lash line. I was cautious to get it in my eyes at first and it does feel uncomfortable in the eyes, but it is not severe. I soon transitioned to using it only at night when the discomfort was not a problem. I wash my eyes in the morning to alleviate any lingering discomfort from the drug.
I used it twice a day for two weeks, then tapered down to once a day.
AND IT WORKED!
I cannot believe I am typing this right now, but it worked. Not helped, or improved, but I have NO pain anymore. I would say cured, but I will stick to calling it a remission for now. I had pretty much given up on a normal life. I was suicidal. But within two weeks of using this drug, my glands opened up and began producing clear, healthy oil. My inflammation has reduced every day. I live a normal life. I stay up late, I work on the computer, I walk in the wind, I drink (sometimes), I smoke pot (once in a while!), I eat sugar (I try not to, but I do), my eyelashes have grown back.
Darn, this is sooo long even though I tried to keep it short! Forgive my mistakes or poor explanations. I'm out now! Any questions feel free to ask BUT do not turn this into a fear-mongering session on the risks of this drug - all drugs we take have risks and Tacrolimus has an excellent safety profile when examined closely. Do NOT mention systemic Tacrolimus in this thread - I have seen this happen in another thread about this drug. No one would EVER recommend systemic Tacrolimus for DE. I know this won't work for everyone. Nothing seems too, and although there are a couple small studies showing that Tacrolimus can help AD, I have also seen people on this forum say it didn't help them at all. But, it's a drug that has actually saved my life, and has gotten relatively little attention here, so I felt I must post.
Penny
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