Hi everyone,
I'll try to keep it succinct as I'm pretty confused.
Long story short I was on a course of Roaccutane which I cut short due to my eyes being unmanageable. They became pretty difficult to deal with after a few months on the course. I used all sorts of drops which helped at first. Then after a few more weeks my eyelids started sticking to my eyeballs in the mornings. I told my dermatologist and he recommended using eye gels, I did this for a week but they didn't help. I stuck it out with eyedrops before bed before lowering my dose and then quitting the course completely. This led to things improving for around 5 weeks, but then things took a sudden turn and I started waking up with my eyes stuck again, which was horrible. My eyes have been horribly gritty, red, bloodshot and burning ever since. no drops seem to help. In fact, no drops at all feels better for some reason the last week or so. But still horrible.
This is the point where I start needing advice.
When all of this happened, my dermatologist requested an appointment, during which, he told me that it is likely that I have damaged the outer layer of my eye. He said he did it once with a tree branch and it took three months of ointment, sometimes getting up in the middle of the night to let oxygen get to the cells, to heal. He said that perhaps the cells were trying to mesh, but that they were being ruined again in rem sleep.
I wasn't 100% on this diagnosis as I'd been uncomfortable enough to have done a lot of research, including on this board, and lots of people in the same boat point to deficiencies in the tear film, caused by the medication. (I don't doubt that these deficiencies could cause the damage. i only doubt that repairing the ocular surface will lead to me being symptom free so long as the dryness continues) I did however start using ointment, which has definitely helped to get me through the night.
I saw an optometrist, as recommended by my GP. His diagnosis was that my eyes may take a while to recover from the treatment and "it's cold outside". This wasn't much help. Apart from that, no dry spots etc. Just redness and very, very bloodshot. He also said a few glands were clogged.
I then saw another GP who prescribed a week of Chloramphenicol. Which made symptoms worse if anything.
I was referred to eye casualty and was looked at by an optic nurse. He said that he couldn't see any inflammation and asked me to come in again the next week. When I came in, the lady I saw didn't have any of my notes, so we wasted a bit of time. She was far less attentive, gave my eyes around a 2 minute look, and told me I have posterior blepharitis and that I should do lid scrubs and warm compresses. I asked some of the questions recommended on this board about MGD:
I first asked "is any oil present when you try to express my glands?" her response was "yes, exactly", (she was Eastern European and I have no idea whether my question was lost in translation). I asked to clarify "I've read that the glands can be ,not clogged, but in fact, not working properly after this medication, can you see any oil?" her response was "yes", but the way she said it made it seem like she wasn't listening or didn't fully understand what I was asking.
Anyway, my dermatologist requested that I have an appointment with him and the travelling consultant who visits the practice last night. In this appointment, both Dr's looked at my eyes. They told me to continue with the eye ointment and drops as necessary and that "time" would heal the issue and that it could take three months if not longer and they may not go back to being 100%. (a change from our first appointment/and also, at this point, it has already been a month since he last told me it would take three months).
The reason I'm worried about this, is because, having read what I have about MGD, the longer the glands aren't working properly, the more likely they are to atrophy altogether. I know a lot of people here are prescribed a short course of tetracycline or topical steroids to assist. I'm worried if I wait another few months before seeking treatment, under the premise that this might self resolve, I could be risking further dysfunction.
I feel like I know enough to question what I'm being told by the "specialists" I've seen, but not enough to know what to do.
I've just started paying more attention to compresses and lid scrubs, beyond that I'm taking thera-tears nutrition (have been for the last two months). I have tried literally all drops/gels but they seem to make me far more up and down, with more severe lows. No drops results in just a constant grittyness or burning. With drops my eyes seem to cycle between constant grittyness, feeling okay and burning but they seem to be much more all over the shop and the grittyness with drops is far more horrible than without.
I'm sorry to have typed so much, but I have been given so many different opinions that, when added to the research that I have done myself, It's really left me with absolutely no idea where I should be going with this.
Absolutely any advice would be appreciated. Should I be seeking doxycycline? Steroid drops? Plugs? I really don't know what to do. But the idea of waiting 3-4months simply hoping for recovery is horrible.
I'll try to keep it succinct as I'm pretty confused.
Long story short I was on a course of Roaccutane which I cut short due to my eyes being unmanageable. They became pretty difficult to deal with after a few months on the course. I used all sorts of drops which helped at first. Then after a few more weeks my eyelids started sticking to my eyeballs in the mornings. I told my dermatologist and he recommended using eye gels, I did this for a week but they didn't help. I stuck it out with eyedrops before bed before lowering my dose and then quitting the course completely. This led to things improving for around 5 weeks, but then things took a sudden turn and I started waking up with my eyes stuck again, which was horrible. My eyes have been horribly gritty, red, bloodshot and burning ever since. no drops seem to help. In fact, no drops at all feels better for some reason the last week or so. But still horrible.
This is the point where I start needing advice.
When all of this happened, my dermatologist requested an appointment, during which, he told me that it is likely that I have damaged the outer layer of my eye. He said he did it once with a tree branch and it took three months of ointment, sometimes getting up in the middle of the night to let oxygen get to the cells, to heal. He said that perhaps the cells were trying to mesh, but that they were being ruined again in rem sleep.
I wasn't 100% on this diagnosis as I'd been uncomfortable enough to have done a lot of research, including on this board, and lots of people in the same boat point to deficiencies in the tear film, caused by the medication. (I don't doubt that these deficiencies could cause the damage. i only doubt that repairing the ocular surface will lead to me being symptom free so long as the dryness continues) I did however start using ointment, which has definitely helped to get me through the night.
I saw an optometrist, as recommended by my GP. His diagnosis was that my eyes may take a while to recover from the treatment and "it's cold outside". This wasn't much help. Apart from that, no dry spots etc. Just redness and very, very bloodshot. He also said a few glands were clogged.
I then saw another GP who prescribed a week of Chloramphenicol. Which made symptoms worse if anything.
I was referred to eye casualty and was looked at by an optic nurse. He said that he couldn't see any inflammation and asked me to come in again the next week. When I came in, the lady I saw didn't have any of my notes, so we wasted a bit of time. She was far less attentive, gave my eyes around a 2 minute look, and told me I have posterior blepharitis and that I should do lid scrubs and warm compresses. I asked some of the questions recommended on this board about MGD:
I first asked "is any oil present when you try to express my glands?" her response was "yes, exactly", (she was Eastern European and I have no idea whether my question was lost in translation). I asked to clarify "I've read that the glands can be ,not clogged, but in fact, not working properly after this medication, can you see any oil?" her response was "yes", but the way she said it made it seem like she wasn't listening or didn't fully understand what I was asking.
Anyway, my dermatologist requested that I have an appointment with him and the travelling consultant who visits the practice last night. In this appointment, both Dr's looked at my eyes. They told me to continue with the eye ointment and drops as necessary and that "time" would heal the issue and that it could take three months if not longer and they may not go back to being 100%. (a change from our first appointment/and also, at this point, it has already been a month since he last told me it would take three months).
The reason I'm worried about this, is because, having read what I have about MGD, the longer the glands aren't working properly, the more likely they are to atrophy altogether. I know a lot of people here are prescribed a short course of tetracycline or topical steroids to assist. I'm worried if I wait another few months before seeking treatment, under the premise that this might self resolve, I could be risking further dysfunction.
I feel like I know enough to question what I'm being told by the "specialists" I've seen, but not enough to know what to do.
I've just started paying more attention to compresses and lid scrubs, beyond that I'm taking thera-tears nutrition (have been for the last two months). I have tried literally all drops/gels but they seem to make me far more up and down, with more severe lows. No drops results in just a constant grittyness or burning. With drops my eyes seem to cycle between constant grittyness, feeling okay and burning but they seem to be much more all over the shop and the grittyness with drops is far more horrible than without.
I'm sorry to have typed so much, but I have been given so many different opinions that, when added to the research that I have done myself, It's really left me with absolutely no idea where I should be going with this.
Absolutely any advice would be appreciated. Should I be seeking doxycycline? Steroid drops? Plugs? I really don't know what to do. But the idea of waiting 3-4months simply hoping for recovery is horrible.
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