Looking for help! Feel like I know too much and too little at the same time!

[LaDiva]

You are welcome, and CONGRATULATIONS!!! How cool about your impending engagement. I will guess this will be a Valentine's Day surprise? Rosacea is hard to diagnose and I did not know that I had it, but suspect that I had it long before the doctor caught it. Some foods are worse than others. Red wine gets me almost immediately, and other foods are not noticeable until the next day. When I have a full-blown Rosacea flare, my eyes turn red and feel swollen.

Many people here have commented on the fact that their eyes feel better while eating. I suspect it has to do with chewing and stimulating fluid production, but just drinking fluids or eating may also be hydrating. I really don't know for sure.

Best wishes to you. It sounds like you have some very exciting (and good) things in your immediate future.

[littlemermaid]

Sporty sunglasses might be bearable eg http://www.eyewear-accessories.co.uk...hamber-glasses. I think it's coupon month on glasses in Dry Eye shop, if that helps https://www.dryeyeshop.com/storefront.aspx (access through email KeratoScoop January 2016, or Twitter) http://www.icontact-archive.com/EzxE...TgXCQd-fyV?w=1

For your GP/Dermatologist to continue oral Isotretinoin with eye side effects suggests lack of understanding of how the drug works. For an NHS 'GP with Special Interest', generic 'Accutane' prescription may be off-label (British Association of Dermatologists guidelines http://www.bad.org.uk/ResourceListin...otretinoin&l=0 and http://onlinelibrary.wiley.com/doi/1...8D628CD.f03t04 .pdf 104k).

It's important that all side effects are clearly recorded in your NHS Medical Record. This will help get the right treatment, especially if GP medicines budget becomes an issue.

The NHS and MHRA ask us to report all side effects under the Yellow Card scheme http://www.nhs.uk/Conditions/Medicin...ages/MHRA.aspx (independent of GP).

The GPs could have referred to an NHS hospital Ophthalmology cornea or ocular surface disorder specialist as a 'drug reaction' (although normal GP referral protocol for unresolved 'blepharitis' is 3m, this is obviously a drug reaction). Referral to a non-prescribing Optometrist was not sufficient, although they sometimes expect the Optometrist to triage and refer. The GP prescription of OTC Chloramphenicol with preservatives sounds harmful (easily available NHS preservative-free, maybe s/he misdiagnosed red eye as an infection?).

In A and E Eye Clinic, 'medication side effects' are keywords to being taken seriously, although it can be random whether we get referral to Consultant clinics.

NHS Choices website is reassuring and useful. The regional hospital Patient Services (PALS) have given good advice and have spoken to Ophthalmology offices direct.

As LaDiva wisely says, I would research which specialist consultants might be best for this at your regional teaching hospital eye centre. We can get a preliminary diagnosis letter in private practice if need be.

For hypersensitivity (rosacea), we used tapering doses after flareups, then minimum drops.

Check long-term side effects on steroids (raised eye pressure, preservatives, cataracts). I wish we had avoided high doses of steroids and steroid/antibacterials from random docs. Cyclosporin is available NHS now as a possible alternative (eg Ikervis) although obviously long term effects aren't known yet.

Hospital Pharmacy services have been excellent on drug actions, side effects, contraindications and drug interactions. They even answer emails. Google 'your health board/region + formulary' to find out what meds are available.

We did well with punctal plugs.

Re getting taken seriously and not upsetting doctors, I strongly recommend obtaining all Medical letters, test results, and even ordering copies of the NHS Medical Record, and carrying the file to consultations. Also typing up a Summary sheet overview (date, doc, observations, prescription). As a newbie, I genuinely thought that it was all on an NHS computer system, ha ha. After a wobble of the ego, doctors have thanked me. It makes your case clear and unavoidable so you get a bit more organised management and referrals, hopefully take some of the worry away.

The question we all have is how medications cause eye problems. The AAO (American Academy of Ophthalmology) also registers eye side effects of meds http://www.eyedrugregistry.com/. This book explains some biochemistry pathways, if anyone can access it 'Drug-Induced Ocular Side Effects: Clinical Ocular Toxicology' Frederick T. Fraunfelder, Frederick W. Fraunfelder Jr., Wiley A. Chambers, Elsevier Health Sciences, 19 Sep 2014.

Very best wishes to you and your girlfriend and hope you feel more comfortable soon.

[Jaybo]

Thanks both LaDiva and Littlemermaid.

I'm not quite there yet, I have money that siphons into a savings account each month. I don't know entirely how much is there just yet (part of me doesn't want to look!), but it's on the cards for the not too distant future. One knee and staring up, blinking away with irritated eyes, certainly isn't how I imagined it!.....

It's strange really. When I look at a lot of the other people who have issues following Roaccutane on this site, a lot of their problems are to do with fairly obvious mgd. i.e they have sensitivity to wind and smoke and AC etc. Perhaps I haven't worked out the pattern yet but wind doesn't seem to effect me any more than anything else. Smoke and chopping onions etc obviously irritates the hell out of my eyes, but that soon dies down, so I assume that there are enough tears for that purpose. When I look closely at my eyes, I can even see a certain amount of oil moving around in my tear film, like when you see oil in a puddle for instance. The scratchiness is my problem though. This leads me to believe that there is irritation on the back of my eyelids or my eyelids aren't producing mucous properly. Or a mixture of both.

As I said, no doctors have carried out a schirmers or carried out any tests on my tear film. They've only looked at my eyes under a slit lamp and with dye. It would be good to find out more accurately what is going on, but.........and here is some further good news,...my main appointment at the NHS eye hospital has been "regretfully cancelled and rearranged for the middle of May". This was the one where the appointment card asked me not to drive etc, so I assume that they had more rigorous testing in mind. Not that the previous doctor made me aware of any future appointments or what they might involve. That leads me to what you were talking about littlemermaid, you're right, I was under the impression that patient files were shared, and my GP and other doctors have said that it's the case. But every appointment I go to, unless I've arranged for the files and results to be forwarded over, they have none of my records whatsoever. Even when I visited the same ward in the same hospital, they had no record of the findings from my previous visit. Incredibly frustrating and wasteful of appointment time. Especially when it's generally something that gets a patient's hopes up.

There's still a big part of me that doesn't want to admit that this has happened. I have some other ailments that can quite readily be attributed to the drug so I feel that once I make a yellow card complaint, I've accepted that these effects are permanent, and have to accept that I've done it to myself. Which is a truly dreadful thought.

[littlemermaid]

If you can see oil and possibly debris in the tear film, I wonder if the MGD is still skin-related too? Did they try you with many topicals before going for the oral med? How do your eyes feel after warm compress? We did well rotating various hypersensitive antibacterial facewashes for infected skin flares. Some of these made things worse. Some people like a bit of Optimel, and most people seem to tolerate Occusoft, as above. We still sometimes use a very dilute teatree shampoo demodex regime 1:50 with boiled water (2wk then taper to weekends only, then break 4wk+ as needed, see demodex lifecycle).

Building up sensitivities was a real problem so we used tapering regimes for everything.

Googling '[your county] optometrist dry eye' can lead us to optometrists who are interested at least. They should look under your eyelids as part of the assessment and see if there's abrasion. Optometrists can expedite your hospital referral.

Have you had a Medical Dermatologist hospital Consultant referral to confirm your skin diagnosis? We found there were various components including seb derm, acne, rosacea (rosacea developed later but is now obvious). We couldn't use some of their prescriptions with the eye problems and they couldn't talk about glands around the eyes, and were defensive or didn't know about side effects of their mainstay topicals, but the observations were useful.

The best person we had for an overview on medication effects and symptoms was the Consultant Rheumatologist.

The Yellow Card scheme is a way for MHRA to get feedback on medication side effects and certainly not a complaint, but I know how you feel. Maybe in future when you've got clearer observations.

[Jaybo]

Thanks again.

I did a quick google and there don't seem to be many locally.

I was on a number of things over the years. I started on topical erythromycin, which cleared my skin to absolute perfection for a year when I was 18. That year is what gave me a complex really, because my skin went from moderate acne over my entire face to complete, baby soft skin and my confidence rose substantially as a result. When it started to fail I went through a number of topicals that didn't work before starting on minocycline, which I stayed on for about 6 years. I started up a topical benzoyl peroxide regimen part way through which kept my skin more or less 100%. I still got a fair bit on my chest and back though. I was switched to Lymecycline for a few years, which, in combo with the regimen I was doing, kept things pretty good for another 18 months before things started to go down hill. I was put back on Minocycline which started to work again, but by this time I'd put the fear of god into myself about what the long term antibiotics could be doing to my stomach, and that the mess might have been actually causing my acne. So I started having severe anxiety and was referred to a dermatologist who recommended the treatment. He said that he'd have put me on it years ago. It was the constant effort every day that lead me to become obsessed with my skin condition over the years without really realising it. My skin was better than most other people's as a result of everything that I was doing because the oiliness kept my skin supple but the regimen kept the acne away, so my skin had quite a glow. It became something that I was quite proud of so it hit me hard when all my efforts started to fail and my imagination ran crazy about how much off a mess I'd be in if my skin got really bad and I lost all my confidence. I always imagined that if it did ever come back, it'd be very mild. But when it did start to come back, it seemed to be everywhere. A lot of it was very small or under the skin, so no one but me would have really noticed. but I was really afraid of how bad it was going to get.

Just lately, and I can't be 100% certain, but it seems as though some of the oil is coming back to my face again, so I'm hoping there is a similar process going on in my eyes.Certain other mucous membranes seem to be presenting more moisture also, so I'm hoping that this is a good sign. But I'm afraid to tempt fate, so I'll leave it at that.

It's funny that you mention a rheumatologist. I have a referral to one in about 6 weeks time because a scan that I had back in September showed fusion of my lower spine (which I had no idea about). The Gastroenterologist mentioned possible early ankylosing spondilitis, and wanted me to see a rheumatologist in case it was confirmed and there was something that I could do to prevent it getting any worse. I know that there are connections on this front but from what I've read, most of the eye symptoms that come with this are uveitis or iritis, which hasn't been picked up in any of the three appointments I've been to so far. I have been experiencing a lot of joint pain lately however, so I have no idea whether this is a latent drug side effect or early AS. Who knows. But from my research so far, I've been frustrated to reach dead ends in people's stories, so whatever happens, I'll keep this updated in case anyone else experiences anything similar.

[Jaybo]

Okay guys, I thought I'd just drop in an update on this. Sorry if it is a bit long.

Thanks for all your advice so far.

I finally bit the bullet and went to the Dry Eye Centre in London. My main concern was the cost, but I managed to scrape the barrel a bit and booked an appointment with Mr Tam. Thank you to those who advised me of this course of action.

He was very pleasant and the appointment was everything I expected.

To re-cap;

I've been suffering from horrendous dry eyes following a course of Accutane/Roaccutane/Isotretinoin. The dryness was bad on my course which was part of the reason I stopped after 4 months, with a projected 3 months left to go. I experienced my eyes sticking to my lids in the mornings and I was, and still am experiencing hair shedding that, in combination with my eyes, made me decide to stop. At the time I stopped, I'd lowered my dose, which helped my eyes a little, there was a point during the course where I was putting drops in every 15 mins. After lowering the dose, it was hourly, and immediately after stopping, over the course of a month, I started only needing them in the morning and before bed. However, 5 weeks after my course, out of nowhere, I woke up with my eyelids stuck to my eyeballs again, and thus began the horror that I am still going through. Over Christmas, while putting drops in, I was frequently left in a state of silent hysteria, trying to hide the discomfort whilst spending time with family.

In my research into accutane induced dry eyes, on this board and elsewhere, it doesn't seem that my symptoms match up with many others. a lot of people seem to suffer quite typical mgd, ie excessive tearing from a lack of oils (which is the main action of accutane, it reduces oil production bodywide, which is how it cures acne. It seems to do a lot of other things also, but that's another story). A lot of people complain of being more sensitive to A/C, wind, smoke etc. I don't necessarily have that, although I do feel my eyes are more sensitive than they should be, I don't think it is the same. My primary symptom is the feeling of dryness that feels like I'm rubbing a finger over my eye every time I blink and constant foreign body sensation, primarily in my upper lids. This is dotted with periods of severe burning but not in a way that makes me need to close my eyes, I feel I can keep them open for a long time in spite of the discomfort. Closing my eyes does nothing for the discomfort on the whole. It feels so constant that it really doesn't seem to matter what I do, or what the conditions are.

I have been taking theratears nutrition for the past few months, but it seems all eyedrops make my condition worse. The only thing I am doing is using Xailin Night before sleeping, to spare me the horrific experience of waking up at five AM with my eyes starting to stick to my lids. I have tried compresses but my eyes become noticeably more bloodshot and angry, and the day following the compresses have usually been more uncomfortable.

Anyway, the appointment:

I was at the appointment for around an hour. During this time I had my eyes assessed. Recent optometrist trips meant that standard eye testing wasn't necessary, my vision is fairly good.

I first had my eyes looked at under a slit lamp with dye etc and everything was fine, although I already knew this from my eye hospital visits, despite the fact that I have never seen a more bloodshot set of eyes. Literally, 90% of my eye surface is covered with a mix of larger veins and finer veins. They look awful. No scratches or dry patches visible though. A video was taken that showed I only had a partial blink in my right eye. This is common though, and may have been because I was under pressure with a white light shining in my eyes.

We then got on to the more in depth stuff, the stuff I was dreading because I know that accutane can cause significant meibomian gland atrophy and drop out, and can shrink the lacrimal gland, it really is a horrible drug imo.

First off was the Schirmers test. I was naturally terrified what the results were going to be because I haven't had any categorical statements on the severity of what I'm going through. And from how it's been feeling, I was prepared for the worst. The strips were put in my eye, and under anaesthetic, my tear production was, surprisingly, high. I have yet to receive the results, but Mr Tam took them out before the time was even up because of the abundance. That was my first relief (I know it can't always be relied upon as it's unusual and eyes do generally react to having paper strips in them, but to me, it was a good sign).

The next test to be carried out was the meibography. This was my biggest concern because as I've discussed, accutane's method of action is to work on glands just such as these, and I know there are many still active on the forum who's glands have been devastated and who I deeply hope will recover. Mr Tam rolled my eyelids over and took a look, taking photos for me to see afterwards. The results - things were, on the whole, okay. My relief was palpable. I had a number of clogged/blocked glands, but I was shown the images which showed that my meibomian glands were a bit disorientated, however there was only one gland missing. I assume it was newly missing because in its place was a deep, wide darkened line, not like when you see images of MG's that have been long gone, where the space is just eyelid and nothing else. To be honest, that one dead gland was enough to cement my hatred of the drug, however.

I then had my glands expressed. I was given a 10 minute Blephasteam session before a tweezer like instrument was used to squeeze the length of the lid line. I can't say that it wasn't painful, and it took a while. I'd tried expressing my own glands before this, following compresses, but have never been able to see anything, so I was concerned that even if the glands were there, they may not be producing. I especially didn't expect to see the huge waxy plugs come out that I've seen on youtube. They did though. There were only 6 or 7 glands like it, but out came a white/yellow waxy plug. Looking at what came out, I honestly don't believe they'd have come out without in-office intervention. Certainly not with my own hot compress and lid massage. The pressure from the tweezers was actually quite painful, so I know it's not something I'd have been able to do myself. I was glad to see them come out , as I know the longer they are out of action, the more likely they are to atrophy altogether. The other glands seemed to be okay, a clear oil was expressed, though I couldn't judge the quantity, only that some came out of all of the ones I could see.

On turning over my lid, there was evidence of some bumps, perhaps caused by an allergy of some sort but not something that was particularly active at that time. Based on the dropped out gland and the condition of my eyes, Mr Tam's opinion was that I may have stopped the drug, literally, just in time. His opinion was that there must have been significant inflammation present to cause the drop out and his hope is that, as it no longer seems to be present, that things may be on the mend. I am praying that is the case, as I have heard of people developing issues further down the road, which may still happen to me.

The treatment that was proposed is one of two courses of action: 1, being a course of antibiotics in combination with antibiotic eye drops and fml steroids to calm things and give my eyes a chance to recover, or 2, a number of follow-up courses of IPL. The cynic in me is wary of the IPL, as three treatments will set you back close to Ģ1000. So if my eyes just need the first option, I wouldn't want to pay that sort of money without trying the antibiotics first, especially given that Mr Tam prescribes by writing to you GP, making treatment available on the NHS (if they agree).

Now this leaves me in difficult position, because my MG's seem okay (they may yet not be producing enough, but evidence suggests nothing major) and my Schirmers was high (again this isn't infallible, but provides a decent indication). If those factors are ruled out, it leaves me with a few potential diagnosis. Potentially the allergy bumps are causing friction in my upper eyelids. The bumps maybe form some sort of reaction that I had five weeks after my course, which may have been due to the sorry state that accutane left my eyes in, leaving them more susceptible. Or, another of accutane's actions is to dry out mucous membranes. Most people taking the medication experience a dry nose and other membranes whilst on the course which diminishes rapidly after stopping. I no longer have a dry nose (although it's difficult to say whether it is drier than it was prior). I have also noticed certain amounts of mucous returning to certain other mucous membranes. My skin and lips are significantly less dry than they were two months ago also. So it could be possible that my eyes are mucin deficient. I would not be able to tell if my eyes were producing mucous without an invasive biopsy. my mouth is still dry however, and this started on the second day of the medication. It's possible that if they are producing mucous, potentially it may not be of the right quality or simply, not enough. If that's the case, the friction could be what is causing the incessant discomfort. My inflammation blood tests have all come back negative by the way. I know tests for sjogren's and the like can do that, but I have to believe the tests for the time being.

So overall:

My current situation is that things are marginally better than they were a few months back, but I have no idea whether that is because I am dealing with it better or because I've stopped using drops, or because of the theratears and the xailin night. I don't know. Since the expression, things do feel a little better though, and I will be trying to maintain this with compresses and massage at home.

The lack of mucous is my main theory at the moment though, and I don't know whether that is being caused by some sort of deficiency or just a latent effect of the drug. My joints have been hurting, so I know that my body's production of some things has been disrupted in some way. Maybe the dry eyes/lack of mucous has led to a lot of damage to my goblet cell density, both through the action of the drug and the then secondary action of my dry eyelids sloughing away more cells every time I blink. That's a horrible thought.

On a side note; because the issues started just over a month after my course, I am a little concerned that my problems may be caused by some sort of vitamin deficiency caused by the overdose of synthetic vitamin A (which accutane essentially is). I've read that Vitamin A can knock out copper stores in the liver and cause a deficiency. I've also read that Vit A binds to the same receptors as vitamin D in the gut. Another theory is that the overdose of synthetic vitamin A can make one deficient in the real vitamin A. Any of these could be possible, perhaps affecting my eyes further down the line if some process isn't happening properly and that is contributing to another process. Who knows. It could be possible that any of these theories could be combining with poor absorption in my gut from years of antibiotic use for the same issue. The worry then, is that antibiotics might help my eyes at the cost of other issues. One thing I can be certain of is that, if I do take the antibiotics, I'll be taking high doses of probiotics during and after it.

As a number of people here have stated that diet cured their eyes, I have a theory that maybe gut balance has a lot to do with some people's issues, maybe that's the mysterious theraputic action of antibiotics in dry eyes, perhaps it curbs some form of bacterial overgrowth which could have been releasing inflammatory toxins or competing for important nutrients in the gut. But I'll talk about that another time and mention what I've read.

Again, apologies for the length but I feel that someone may benefit from my experiences at some point.

Jay

[LaDiva]

It certainly sounds like you are moving in the right direction! Thank you for giving us a great overview of your procedure. I am going to have it done too, I think. Last week I had a very sore lower lid, and after expressing the glands, got a big bunch of white stuff out followed by yellow stuff. I've been better since then, but think those glands could stand a good cleaning out. You might try a good probiotic. Dr. Ohhira's is good, although they are all a bit different. I don't think you need to overdo the probiotics. Just one every night before shutting things down. You are young, so maybe just consider eating a well balanced diet. Keep us posted. It sounds like you are on the mend!

[tess77]

Jaybo, I really appreciate all your writing! I too had a 4 month course of Accutane, really low dose 10mg every third day, this as a treatment for my ocular rosacea and that drug has totally destroyed my eyes! The strange thing is I was not nearly as bad when I had it or short after but the condition has escalated every day since...

I live in Sweden and went to Oslo in December, Torreoyneklinikken, and got the diagnose Dry Eye Disorder stage 2. Then and there I had a normal tear production of 25 Schirmerīs test. My TBUT has though been low all the time 1-3 sec, because of the lack of oil, due to Accutane usage. They also saw I had only 50% efficacy of the glands due to the medicine, not a gland dropout I think but shortened and disformed. Hard to tell if itīs because of the ocular rosacea or the Accutane. They recommended me to go to London to Dry eye centre to try IPL so I have been there 3 times now, unfortunately without results yet... Last week when I saw Dr Hodd she prescribed steroids and Ikervis since my own tear production now was only 5 on Schirmers...probably because the inflammation is still going on, not that visible but strong, regardless of me being on the doxy since September, ever since I ended the Accutane. It could also be that I had plugs put in that the inflammation got worse, I got them here in Sweden to help the artificial drops stay better in my eyes...

Warm compresses my rosacea canīt stand but I recently ordered the Blephasteam to try with that and maybe afterwards cold compresses, thatīs the only thing that gives me relief right now... Try to get out as much as I can and use drops much more than I should, only to get at least some comfort in my eyes. I eat Thera Tears Omega 3, among other supplements but no effect yet, Somewhere I even read Omega 3 after Accutane can prolong and worsen the side effects
I wish I never had this drug and have little hope of ever recovering...

[Jaybo]

Hi Tess, yes, I also read about Omega 3's causing further issues after stopping the drug. The theory was based on accutane being a synthetic form of vitamin A, which stores in the body. I think the theory was to do with the levels of vitamin A in Omega 3's (particularly cod liver oils) keeping the body in a state of hypervitaminosis.

That's crazy that it would have had such an effect on you after such a low dose course! Taking a tablet every three days would mean you only took 37 tablets, so 370mg in total. At one point during my course, I was taking 60mg a day, so would have done the equivalent to what you took in total, in the space of a week, (I took that for 8 weeks). On that front, if the accutane is causing any effects, I truly believe that you stand a good chance of recovery. It's quite common for people to be on doses such as 80mg or higher, and stay on those doses for 7 or 8 months to hit the cumulative dose of 120-150 mg per kg of body weight that dermatologists suggest, so even I have had a comparably low dose, in fact, I only reached half of the dose that was prescribed for me. If you were to weigh 60kgs or similar, they'd prescribe you 7200mg for your course. My calculator suggests that you only took 1/19th of that, so I really would hope that you'd be okay.

Accutane is a strong medication though, and I'm starting to wonder if it's damaged my stomach. There have been links to Crohns and collitis in the past, so perhaps it's done some type of damage to me that way. Maybe I have developed leaky gut or coeliacs because of damage (I also have a burning in my joints). At some point soon I'll probably be trying a diet that minimises inflammatory products, to see if that helps. I'll be pretty upset if it does, as it'll suggest I may be stuck with intolerances. But if it lets me get on with my life, then I'll have to learn to accept it.

What are the symptoms of your rosacea? My eyes are so bloodshot at the moment that I wonder if I have developed it. I don't have any visible inflammation although my lid margin is a little red. On the whole though, they are just severely bloodshot and uncomfortable.

[Jaybo]

Hi guys. Just thought I'd update. I'll start by saying things haven't really improved. I'll describe the past few months below.

Following my appointment at the Dry Eye Centre in London, as I mentioned, I was given two courses of action to choose from' one being a combination of antibiotics, antibiotic drops and fml steroid drops. The other being a course of IPL. I decided to try the antibiotics and eye drops first as I can't really fund the IPL treatment.

I had to wait a few weeks as the recommendations letter from the Dry Eye Centre came to me, and a copy wasn't sent to my doctor, so I had to wait until I saw her in an appointment to discuss what had been recommended. Mr Tam decided it may be best to try just the drops first, given the fact that I've had a lot of problems with my stomach of late.

My eyes had felt some improvement (marginal) prior to the appointment, though it could have simply been just part of the cycle of peaks and troughs I have been going through.

Anyway, the prescription was to use the antibiotic (chloramphenicol) drop and FML drop for four weeks, at a tapering dose: 4 times a day for a week, then three times a day for a week, then twice a day for a week and then once a day for a week.

I'll start by saying that my eyes, as previously, absolutely couldn't tolerate the chloramphenicol. My eyes burned and ached for hours after each dose (and putting it in four times a day meant that it was constant). I managed it for three days, before starting to drop my dose, and by the end of the first week, I'd spoken to Mr Tam, and agreed to stop the antibiotic all together. I did however, continue to use the FML drops as prescribed.

The first week was somewhat marred by the antibiotic drops, but I can say that my eyes looked calmer, the veins were less apparent (though still significant). During the second week I noticed a bit more of a difference and my eyes felt calmer. Not 100%, but probably 70% better. mornings were still pretty bad though.

As time went on over the next few weeks, I dropped to twice daily applications and then to once a day. Even at once a day, my eyes felt okay. At times it felt like the FML drops left a bit of a chalky residue in my eyes, which made me think that perhaps, as the idea was to break the cycle of inflammation with the FML, perhaps if the cycle was broken, my eyes might feel even better when I tapered off them completely. Towards the end of the course, my eyes felt no different with one drop a day in comparison to how they'd felt all through the other weeks, so I felt some hope. The chalky residue was often present in my eyelashes, which was annoying, but, I'd take that any day over pain.

Anyway, I stopped the drops altogether just under a week ago, and what I can say is that my eyes feel awful, and have done ever since stopping. They actually feel perhaps worse than before I used them, which was a fear of mine and I'm absolutely praying it settles down. So that's where I am now, my eyes felt pretty good whilst on them, but right now, feel worse than they did before starting. The gritty, burning, friction type pain is back and I have been sleeping in pain, which wasn't happening so much previously. Now they are uncomfortable when I shut my eyes to sleep, and burn as I leave REM sleep and become a bit more aware, you know, the time just before you wake whilst you become increasing ly aware before opening your eyes.

Other information:

I figure it makes sense to add a bit about the other things I've been going through. I'm currently awaiting the results of my HLB27 blood test and also the results of an MRI scan of my spine to see if there is any possibility that I have anything along the lines of ankylosing spondylitis, though my blood tests, including ANA, have been clear on a few occasions up to now. I've also been in talks with my doctor about any autoimmune connection, but they don't suspect anything on that front. The GP I saw a few nights ago said that they have on record that I don't have dry eyes, and it doesn't seem as though they have a theory on what is causing the pain. That does tie in with my schirmers test from the DEC.

Anyway, up until the most recent appointment, I hadn't mentioned any of my suspicions to the GP for fear of influencing a true medical opinion, I wanted the tests etc to show what I have. I had a bit of a fear of sounding like a bit of a nut case if I started reeling off all of the research I've done also. However, the most recent appointment was with a different GP (who has a background in rheumatology) and he has been the first doctor out of all that I've seen who has point blank asked me; "do you have any theories on what may be going on?". I mentioned that, as I've experienced joint pain, dry mouth, dry eyes, hair shedding and that my first symptoms, early last year, were stomach related, I was worried about a host of autoimmune diseases including sjogrens and lupus but stronger theories leaning towards reactive arthritis or celiacs. He looked over my blood tests and said it would be very unlikely, and that, as I had tests in July last year for Celiac, it doesn't usually change. In reading anecdotal evidence around the web, I know that the blood tests often don't show anything for a long time, so i don't know what to do with that information. I know, during the appointment, I did my usual - nod along, smile, say "okay, thankyou", before leaving and thanking the doctor again. Heading back out into the world of unknowing once again. He did say that if it was reactive arthritis, the only solution would be to wait it out and that my joint pain could also be fibromyalgia (which is a diagnosis I've feared because there is little treatment and it doesn't seem to fit, especially given the severely bloodshot and uncomfortable eyes). he has said that I should call him in two weeks time to see if the results of my MRI and HLB27 test are back, so that we can decide where to go.

For my part, I feel as though I should try a restricted diet soon, to see if it helps. If there's any connection to gluten, it would make sense for my eyes to be bad this week as my diet has been very heavy in pasta and bread, so there may be a connection. The reason I haven't tried it yet is because I know that it would skew any testing and it could be beneficial to have it on file if that's what it is.

I still have a few theories as to what may be going on. As antihistamines helped a few weeks ago, it led me to wonder if some sort of immune system reaction was going on, perhaps causing inflammation under my eyelids that I can't see. Perhaps an allergy has been rapidly developing which is why they didn't feel to bad with antihistamines a month or so ago, but the continued exposure to whatever it is (perhaps something dietary) is causing an ever increasing level of discomfort. What the allergy is, is still a mystery to me. If it is gluten, then I wonder if, in a similar way to celiac, it's causing vitamin deficiencies, which could also be contributing to my eyes. Perhaps vitamin deficiencies are affecting my mucous membranes.

Either that or my course of accutane has caused other vitamin deficiencies straight of the bat, by overloading or atrophying receptors in my gut and stopping my eyes from getting what they need. Whatever it is that's going on, it sure is painful and certainly has me questioning how long I can go on like this.