New to dry eyes, desperately trying not to over-treat

[cupcakes]

Hello,

I'm new here and new to dry eyes. Any advice would be appreciated!

About four months ago, I started a new job working in a somewhat low-humidity environment. Within 2 weeks, my contact lenses were blurring ever so slightly. I dosed up on Oprex dry eye drops (preservatives, oh big mistake) and it would be fine. I ended up using the drops more and more and began to realise something was going on. So went to see the optician, who told me I had a 'dry patch' in my left eye. My right eye was fine at this point. I was sent away for a few weeks, told to lay off contact lenses and they were going to trial me on silicon hydrogen lenses. I went back three weeks later and my left eye was worse, but I did have a bad cold and my optician felt my eye would get better. She sent me off with coopervision biofinity lenses and acuvue true eye with the idea I would trial both and come back in a month and let her know which was best.

Well I figured I'd give my eyes a rest still and trial the lenses when they felt better. Then I made the big mistake (on the advice on my optician!) to take allergy tablets as i'd previously have problems under my eyelids due to hayfever. Well! Within 5 days, my eyes were 10x worse. Both now felt dry and the vision blurring was a lot worse. Up to that point i'd only had blurred vision in contacts, now I was getting it with glasses. So I stopped the tablets (cetirizine hydrochloride) but the damage was done so to speak. From this point (6/7 weeks ago maybe), my eyes have gotten worse everyday. About 3 weeks ago I panicked because they were SO dry I could barely keep them open and it was impacting my job. I saw a different optician who told me both my eyes were dry, agreed contacts were out of the question and told me basically to just keep using drops. I didn't get a clear answer as to why I have dry eyes but he said he feels it has been 'triggered' by my job combined with the winter's central heating. He mentioned that he thinks I don't naturally produce enough tears?? Apparently I have 'shallow' tear something? And its just the way my eyes are (rather frustrating). So this was possibly always in the pipeline.

Since then, I've been using Moorfield's Hydromoor drops (non-preservatives. However, I am REALLY keen NOT to 'over-treat'. Maybe this sounds a bit strange, but I am convinced over-using preservative eye drops escalating the whole condition. I just can't imagine that constantly dosing my eyes up is going to help them produce their own tears? My optician told me this is basically rubbish...

So at the moment, I use drops before I sleep and maybe 1-2 times a day IF required. I sort of judging by how they are feeling. I don't want to leave them really dry if its damaging but nor to I want to constantly dose up.

I'm also taking Omega 3 (3x 1200mg), zinc+magnesium and plenty of Vitamin C. I've been taking these for about 2 weeks. I've read some threads here about Omega 3, but I found it a bit difficult to understand the whole fatty acids, ALA, DHA, EPA...

My eyes are up and down, today they are sore, a bit inflamed and not looking great. In the last week, the redness has significantly increased (looks lovely of course). Other days they feel better but they are nowhere near normal . Whilst I miss my contacts, my biggest concern is that this is impacting my job. I've had some difficult stuff in my personal life and my job is the one great thing I have going for me. I'm struggling some days to focus on the computer and overall I'm starting to get a bit depressed and despondent.

So questions:

At what point do you think I need to consider seeing a specialist?

How long should I 'give' my eyes to see if they improve with minimum interference (Omega 3, vitamins and eye drops 1-2 a day)

For night time, has anyone tried rubbing coconut oil over eyelids? I've read the fatty acids could help but I'm a bit wary.

And to any long-term sufferers:
If you don't mind me asking - is there anything you would do differently if you were at the beginning of the dry eye journey again?
I ask because about 10 years ago I developed Psoriasis. I had no clue about how to treat it and promptly went off to the doctors who chucked steroid cream after steroid cream at me then when it got worse, I ended up having light therapy and all sorts of treatments that ultimately did not help in the long run and actually made it escalate faster! If I'd known then what I do now about Psoriasis I NEVER would used those creams, it started me off down a path of misery that lasted about 4 years. These days I manage my Psoriasis without any of that stuff and am very careful.
So I am desperate not to make my dry eyes worse by trying anything and everything.

Any responses would be appreciated

[bakunin]

Hi cupcakes,

Despite I have severe dry eye symptoms, I don't use any eye drops. All them (preservative free or not) make me worse. So, you are not the only one. And there are more people on this board.

What I would make different i the begining I think it would be going to a doctor sooner (but I don't know it would have made some difference), and, mainly, protectig my ees from bad enviroment (AC). In the first two months I didn't realise that the AC in my job was making my eyes feel that bad.

I think it is time to see a specialist, but keep in mind that a specialist doesn't mean a solution, but just another trial.

bests

[cupcakes]

Thanks for the reply bakunin.

May I ask, what do you do instead of using eye drops? As in, when my eyes are so dry (when just blinking feels like its scrapping my eyeball) I worry about potential damage if I don't lubricate.

Unfortunately, given its winter, the central heating is unavoidable in my office but when at home I keep the house cool.

I'm in the uk so I'm thinking of getting an appointment at moorfields eye hospital to see a specialist. I'd like a proper diagnosis.

[littlemermaid]

I'm in the uk so I'm thinking of getting an appointment at moorfields eye hospital to see a specialist. I'd like a proper diagnosis.

Good plan, Cupcakes.http://www.dryeyesmedical.com/ Cornea and anterior segment team under Mr Stephen Tuft. I notice Valerie Saw is on the expert panel for the information website http://www.dryeyesmedical.com/aboutEP.aspx. We're paediatric so I've got no experience but maybe other people will post up. Last quote I got from Moorfields Private was £350-£400 if you want that. They are good at volume so the NHS wait may not be too long. Moorfields A&E is always an option, 9am is the best time, Saturday worst.

What I would do differently is to go straight to a major regional teaching hospital specialised eye unit or Moorfields for a diagnosis and treatment. I would make sure we were with an anterior segment consultant who lists ocular surface disorder as an interest on the hospital website.

Any problems with NHS wait or attitude, I would pay for assessment by anterior segment and ocular surface disorder consultant in private practice who also works NHS at major regional teaching hospital eye clinic, preferably in private section of that NHS hospital where all the equipment and labs are available. Also then there's the option of continuing NHS through GP referral. http://www.drfosterhealth.co.uk/consultant-guide/

Personally I don't rely on a private clinic without the NHS guarantee of standards although I did use one originally for diagnosis and advice on a private provider/NHS eye consultant suggestion when we got nowhere with county NHS service - no 24/7 cover or qualified backup, no access to medical records, 'caveat emptor - buyer beware', evil medicolegal setup. I just phoned ours, where we are on outpatients list, with a nasty eye flare and they said there's no cover 'go to NHS GP or A&E'. Funny they don't mention any of this in the glossy brochure. Or the small print, which I've read.

I really think it's worth going the extra mile on this ~ especially when it's our eyesight.

[bakunin]

Thanks for the reply bakunin.

May I ask, what do you do instead of using eye drops? As in, when my eyes are so dry (when just blinking feels like its scrapping my eyeball) I worry about potential damage if I don't lubricate.

Unfortunately, given its winter, the central heating is unavoidable in my office but when at home I keep the house cool.

I'm in the uk so I'm thinking of getting an appointment at moorfields eye hospital to see a specialist. I'd like a proper diagnosis.

Hi cupcakes,

I felt "free" to quit the eye drops since the doctors didn't see any corneal erosion or damage in my cornea (and for that reason they think I don't have such severe symptoms).

I don't use any drops or gels in my eyes. I wear moisture chamber glasses at work (Wiley- X Air Rage), and I should wear them at least outdoors either. I do warm compresses to get relief, mainly in the winter. I tried fish oil and flaxseed oil for 7 months but with no result. I tried restasis either. And I tried coconut oil in the eyelids, but it didn't work. In fact everything that goes to my eyes seems to make them worse.

[Cristi]

Hi cupcakes
I totally understand your worries and I agree 100% to what bakunin said. It is the same for me. I do not use eye drops at all, any kind of drop is making my eyes worse. I do have lower plugs and I wear Ziena Oasis and I manage it without drops. Even when I was at the beginning my eyes being totally miserable and didn't know there were other options beside drops I was very cautious not to overuse them. I hated being dependent on drops.
Sometimes it seems I have some minor scratching and other times I don't but I prefer to have my eyes protected by my own tears...
All the best

[gormz]

Definitely try the natural stuff first. I would say more important than supplements would be to change your diet if its not the greatest. This has made the biggest difference for me. Im with you on the least you can do to get by the better. Your body knows how to heal without throwing a ton of pharmaceuticals at it, which doesn't address the root cause it most cases.

[cupcakes]

littlemermaid: thank you for the links, extremely helpful! I am going to go through the NHS, hopefully the wait won't be too long. I'm thinking where my eyes are severe yet, I can handle having to wait a while for an appointment.

Bakunin, Cristi and gormz: I'm relieved to know I'm not imagining that drops are bad for my eyes! My optician has told me I should drop as often as I need but my instinct is that I need to be cautious.

I'm definitely going down the natural route first. I know from past experience with my psoriasis that diet can make a significant difference to my health. I'm trying to eat well and drink lots of water (I have a tendency to not drink enough during the day and I'm thinking hydration must be pretty important with dry eyes!).

Fingers crossed, I'm not expecting to wake up tomorrow (or even next month) with my eyes better but I am hoping to stop them from getting any worse. Will let you know how I get on.

At the moment my optician is keeping an eye (ah the pun) on the health of my eyes and so far no damage to the cornea thank goodness. I need that reassurance when they are having a horrible day.

[littlemermaid]

Cupcakes ~ Very interested on how you're managing your psoriasis because we are dealing with unresolved periorificial rosacea dermatitis causing chronic eye inflammation. Prescription so far has been: oral antibiotics, steroid cream, tacrolimus, topical retinoid, and many topical antibacterials.

I am reading that psoriasis is a similar immune system pathway with reduced antimicrobial skin barrier, so what works for you?

[cupcakes]

littlemermaid: (This is a bit of a long one I'm afraid). At the moment, I am using no prescription creams for my psoriasis. I eat well (low on cow-milk), drink only water, exercise regularly and use only a chemical-free moisturizer (no exceptions to that one). I am extremely cautious about what goes on my skin, currently I use Salcura spray, which is expensive but natural and seems to suit my skin well. I actually cleared using this spray about 5 years ago, although that is unlikely to happen again as nothing seems to work more than once with my psoriasis. If my skin is very inflamed and I have to use something other than natural, I use Sudocream which due to the zinc properties appears to do it good.
In the past, I've had horrible rebound flares following strong steroid cream use and as a result I am now extremely wary of steroids. I eventually ended up having UVB treatment as a result of escalation due to steroid use. Anyway so about 3/4 years ago, I decided enough was enough. Because my Psoriasis was bad enough to need something, I used coal tar cream, which contains hydrocortisone (the mildest steroid cream treatment I could get) and gradually it helped me patches (I'm talking 3-4 months to see any sort of difference), I combined this with just moisturising and it works for my skin. However, the cream was discontinued last year and so for the last 5 months, I am completely prescription-free and doing fine!

Last I heard was that Psoriasis was an immune-system disorder, I have certainly noticed during in the worse times that my poor skin is practically defenceless when in an inflamed state so I try to 'baby' it. And the best way to baby it is, for me, the natural route.

I'm afraid I have met plenty of people through a similar forum to this who have overhauled their diet, restricted use of meds and had no success with their skin, but for me it has definitely definitely made a difference. However, I would say its better as prevention as opposed to treatment. My skin was in a reasonably condition when I started the natural route. But at its 'height' (40% body coverage, oh lovely days), I did use strong treatments. Then as soon as it cleared under meds, I tried to prevent it coming back via the natural route.

I also think hormones play a huge part in all this. My skin was a lot worse when I was 14 - 18 and I used to get very upset at the state it was in. This days, when I get a new patch of psoriasis, I don't panic or get upset. Stress definitely makes my health worse!

It sounds like you are very clued up and experienced, so I assume you have a good specialist dermatologist? I had trouble getting the support I wanted from a specialist, who even the good ones were to meds-orientated. I haven't seen anyone in years. At the moment, one of my patches is rather inflamed and looks troublesome, probably an excellent candidate for a steroid cream but that's not going to happen :P

[littlemermaid]

I assume you have a good specialist dermatologist

No, not really, we haven't. This is why she's still on eye steroids after 5y and planning for cataracts. I've done 3 counties' paediatric dermatology and can't get a conversation. One feisty dermatologist even kindly raised this at a national conference, got silence and a few 'I've never heard of it' afterwards. She suggested going out of country, so did the Paed Neuro.

We made it NHS to Prof Tony Chu and got 'children don't get rosacea', can't treat symptoms without oral meds (oral antibiotics have triggered chronic intracranial hypertension), and vit A based meds do not cause MGD (he was expert witness for the Leeds Accutane investigation in '80s). Best advice from him, 'find a hospital where ophthalmology and dermatology communicate'. In Oxford, we got 'I'm not interested in the eyes, they look fine' and fury when we said topical retinoid Adapalene had caused weeping MGs 'on the nose it's nowhere near the eyes' (Dr Scheffer Tseng in Miami has observed this too).

As you say, everyone wants to prescribe steroid on the face. Currently we are maintaining on topical antibacterials and experimenting with moisturisers - I'm following James Del Rosso although not sure we'd ever get to Vegas (also Frank Powell and team in Ireland on pathogenesis). I agree with our Paed Rheum that it actually looks more like a periorificial dermatitis, and with Moorfields that it's a type IV hypersensitivity. This is because, as an immunology condition, it can show in any other orifices. She also has pressure urticaria sometimes, contact sensitivities, red rash in sunlight. Sounds like an autoimmune disorder - Professor Google tells me it's a steroid-hormone-lipid metabolism disorder along the adrenal cortex caused by interfering with cortisol by using hydrocortisone http://en.wikipedia.org/wiki/Cortisol. This is why stress and hormones and diet are factors in this pathogenesis.

If anyone's interested, PubMed search 'child steroid rosacea' matches her case. During adrenarche (pre-puberty hormone changes), the GP prescribed Clotrimazole with hydrocortisone 28 days 2/day for Tinea on the hairline. Reports here too of this happening with oral steroids and inhaled steroids, nose and mouth. The 'rosacea' response can show only in the eyes as blepharitis+keratitis+conjunctivitis, which is a tough diagnosis considering how many children get styes and chalazia which resolve, or eg only around the mouth or nose as a dermatitis.

Eg this study 'We evaluated 106 (46 boys and 60 girls) who developed steroid rosacea. Preceding steroids used were predominantly (54% of children) class 7 agents including 1% hydrocortisone and over-the-counter hydrocortisone preparations. Only 3% of children had used superpotent (class 1) topical corticosteroids. The mean age at onset was 7.04 years (range, 6 months to 13 years). Twenty-nine children were younger than 3 years. A family history of rosacea was found for 20% of the children. After abruptly stopping topical steroid use and starting treatment with oral erythromycin, 86% of children had complete clearing within 4 weeks and 100% by 8 weeks. Clearing within 3 weeks was observed in 22% of children. CONCLUSIONS: Abrupt discontinuation of topical corticosteroids and institution of oral antibiotics resulted in clearing within 4 weeks. This finding does not support the concept that prepubertal children with steroid rosacea need to continue low-strength steroids in a gradual withdrawal strategy. This conclusion is supported by the finding that 54% developed the steroid rosacea while being treated with the lowest-strength (class 7) topical corticosteroids. Even over-the-counter hydrocortisone preparations induced steroid rosacea in susceptible children. Susceptibility may be genetic as 20% of children had a first-degree relative with rosacea.' Steroid rosacea in prepubertal children, Weston and Morell, Arch Paed Adolescent Medicine 2000 [PubMed 'child steroid rosacea eye']

We would love to have a sensible doctor to talk to. LM's counsellors have suggested bad consultations are making things much worse so we've stopped too except for the eyes. Important for you to have a regular ophth.

Not good about your eyes, Cupcakes, but it's a real joy that you're here with your experience and we are thinking along just the same lines, restoring the balance rather than overtreating. We like Sudocrem too but the lavender is a problem. Thanks for Salcura, we'll try it. It's getting balance in the moisturisers we're finding difficult but, as you say, we want gentle anti-bacterial oils too. For cases like LM, Dr Del Rosso is supporting the skin barrier with ceramide bases before blitzing with antibacs and I think he's along the right lines there.

Sorry to go off on a rant but it's so nice to talk dermatology ~ is there any way you can get humidity into your work environment? or can you face wraparounds?

[cupcakes]

Hi littlemermaid,

I'm sorry you've had trouble finding a specialist. To be honest, I do wonder what exactly I would do If my psoriasis had a serious flare because I don't have a specialist I trust that understands my serious reservations about steroid-use. Given that this is an incurable immune disorder, and its likely I will always have symptoms, I don't see the point in spending my life treating it with steroids and getting stuck in that endless cycle. The links you gave are very interesting, I agree that with skin disorders, you need to support the skin barrier. Its very obvious that when my skin is flaring, inflamed and delicate, it needs help rebuilding without being clogged by products (and I include both prescription creams AND natural creams in that). For me, I am absolutely determined that restoring the balance is best for my skin however, I think its important to recognise this is very, very difficult to do this. I've done an awful lot of experimenting with different 'natural products', my psoriasis getting worse all the while something fails to help. I still haven't found a winning solution, I judge it month-to-month because unfortunately the natural route can take a very long time. I'm always weighing up whether to continue with something that doesn't appear to be working. At the moment Salcura doesn't seem to be doing anything but its only been 3 weeks, so as long as its not getting worse, I'll stick with this routine (Salcura intensive and sudocream when really inflamed, I agree about the lavender, my skin is very sensitive to all sorts of 'natural' lovelies but on balance I feel its worth using. I can't use Aloe Vera which is a shame as its a fantastic anti-bacterial). When I was younger, I never considered the natural route because I was 16 and desperate not to be covered in Psoriasis! I'm very lucky in that I've never had it seriously on my face but when I did get a few patches, it was very difficult not to slap steroids on it just to quickly get rid of it! It was upsetting and I wanted quick results. But going natural will never give that...

I notice that Salcura has a product they recommend for Rosacea. I have obviously never used it and I'm always wary of recommending products in case people have bad experiences but I can say I've found them not to be a 'phony' company, their products are completely natural and have been decent for my skin (don't even get me started on the money I've spent over the years on products that turn out to be not quite what they seem...).

Of course, your daughter is welcome to pm me. I'm afraid I don't know much about Rosacae but I do about being that age and having skin problems! I also know about being stuck on topical steroids :/ it certainly wasn't a fun cycle to break.

Thank you for sharing, I did wonder whether it was too soon to worry about my eyes but because of my experience with my skin, I just know that its best to try and help my eyes naturally first. It would have saved me some awful years with my skin if I'd have known what I know now. However, on a positive note, I don't know your daughter's medical history or much about Rosacae, but I can say despite years of treating (or over-treating) my skin, I have managed to get it back to a good state. It'll never be as good as it could have been if I'd known better but it is so much better.

[littlemermaid]

Thank you, Cupcakes, that is very kind.

We can't use aloe vera either unfortunately and I had high hopes for the Body Shop aloe vera moisturiser with sunblock. It even makes my face sting. The honey and oatmeal facemask has been good though. Prof Chu suggested the Simple range from the supermarket and actually, it's been pretty good. We'll try the Salcura rosacea product. We've done well on eg Natures Gift beeswax and honey bases but again they put additional ingredients in that cause problems eventually. Time to make my own, I guess.

Are you using a cool compress for your eyes when you get home? Do you have any allergies triggered at work?

[cupcakes]

No problem, and its been a while since I talked dermatology, I'm not massively active on that forum anymore, but its good to hear other people's experiences.

I can't use any Body Shop products . I used to use this fantastic hemp moisturiser but even that turned irritant. Lush is also out of the question As for shea butter, no no no.

Unfortunately I work in a strongly air conditioned and humidity controlled environment (I am an archives assistant at a museum, we keep the stores at 17 degrees and 40% humidity). I do try to only spend time I have to in the actual stores. I am making a huge effort to cut down on my computer use at work where possible and (sounds ridiculous) but am blinking like a manic to break up focusing too hard. This combined with eye drops ONLY at night, seems to be bringing the inflammation down. At home, I am not using central heating, freezing, but a dressing gown fixes that .

I am also being very good with keeping hydrating, supplements and eating well. My eyes have definitely been better the last few days (a week ago I was struggling not to burst into tears at work because I could not keep my eyes open, blinking was so dry). Fingers crossed. I am due to see my optician in a week who, though not an expert, can tell me what dry spots I have. So, we'll see...

I almost bought a humidifier and was going to start compresses (though I am confuses between hot and cold?) BUT then I decided I was going to wait and see first whether I really need to be doing those things.

[littlemermaid]

What a great job! Could be that if you've not had dry eyes before with the psoriasis, do you think that it's eye protection that's needed? Thank goodness there are prescription wraparounds on the high street now that would help keep a moisture chamber. Could be you need computer-user moisture chambers? Hopefully the optician will know what's available. D&A were telling me only certain branches stock these and suggested asking head office. Ours suggested wraparound sunglasses with clear lenses. He says the main technical difficulty is to have a flat part where the prescription needs to go.

If you feel you need to give in and use an eyedrop, the ophth recommended normal saline (sodium chloride 0.9% individual vials from pharmacist) as an attempt to reduce the sensitivity ingredients from eyedrops. The osmolarity isn't right and they don't coat like a lubricant but she liked them for a quick flush in a/c eg computer lab at school.