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**littlemermaid** · 21-Jul-2013, 10:14

Welcome, Lahlah ~ and very very happy that you are comfortable and know what to do.

Pretty much exactly the same thing happened to us, except we were started on anti-allergy drops for 3m before Maxidex, Prednisolone, FML, and the 'diagnosis' was Thygesons superficial punctate keratopathy, which signs even Thygeson later recategorised into blepharitis with cornea damage or viral. Hopefully they would recognise MGD now, or at least a high street optometrist might. Was your first sign over-watering eyes and trouble with light?

Lord knows why some still don't work to NHS and NICE Clinical Guidelines or Clinical Knowledge Summary standards http://www.nhs.uk/conditions/Dry-eye...hat-is-it.aspx. Moorfields http://www.dryeyesmedical.com/ and http://www.goodhopeeyeclinic.org.uk/blepharitis.htm are pretty useful too. Some poor children are still ending up with vision loss because of this diagnosis problem, and that's in UK (PubMed 'child blepharitis' and 'child blepharokeratoconjunctivitis'), and I'm very sorry to hear you had such bad RCE without much advice other than steroids in your 20s.

Global patient networking is a wonderful thing. All we want now is some nice docs to join in, thought you might like this ~ 'Moorfields team prove clinical and social benefits of public and patient involvement' http://www.moorfields.nhs.uk/Aboutus...areleases/MKtb

**lahlah** · 21-Jul-2013, 13:17

Thank you, LM. All I remember being told, back in the day, was that I had little ulcers around the edge of the cornea. In fact, that's wrong I THOUGHT it was around the iris. Ignorance! Different things seemed to trigger it - dust in the office, seeds flying up weeding the garden... You are right about the over-watering, I thought I had a blocked tear duct. Currently, I am very diligent re flaxseed eyebag, eyelid massage and lid wipes (can buy them at a very good price on Amazon). I think, though, I can see some blocked glands in each lower lid; will they clear eventually, do you think, or am doing it wrong? Not sure how long the procedure will take to clear blockages. No one to ask. Don't really want to see Comsultant privately again, too expensive. Not sure he is all that informed anyway. And certainly not the hospital. I feel like asking them if that are familiar with the DEZ site!

Lesley

**lahlah** · 21-Jul-2013, 13:25

PS should have checked out the web addresses you gave me, before replying; the blepharitis one is really useful.

**littlemermaid** · 21-Jul-2013, 13:51

Ha, docs on DEZ would be so cool. It would be great to have docs and optometrists brave enough to join in with info on patient forums, even post up a few useful links to the literature. An inevitable step for the global internet generation ~ really looking forward to free public internet access for everyone worldwide and some eMedicine for people who can't get doc help.

Yes, even people here have cleared their MGD with the usual methods (and I've met plenty in real life who've cleared their bout of chalazia easily) - see Triumphs. Allergies and immunology seems to get overlooked a bit because I guess the Ophth can't help us work out what we are sensitive to, esp if it's a delayed hypersensitivity. Also Ophth sometimes forget to think about oral and topical meds which affect the eyes, computer use and a/c at work, and systemic conditions. I'm very interested in dermatophytes round the eyes (not just demodex) for people who have skin problems and the immune system for tackling them. And how diet affects the lipids and gut microbiota.

So yes, chronic on/off blepharitis. We do what we can to keep things good, like you. We have cleared blocked MGs with diligence but it's been hard to know what's different apart from that. Some people clear on oral antibiotics, and we did clear briefly on topical azithromycin. The main problem has been for us that it comes back if we are slacking on hygiene, diet and warm compress. Keeping the flaxseed bag clean is not so easy, is it, although LM (daughter) says it is best for clearing chalazia because of the direct warmth. She uses warm shower and hot flannel sometimes too. We've also purchased Blephasteam goggles at vast expense http://www.butterflies-eyecare.co.uk...ephasteam.html but she (teenager) likes them and they are relaxing every day - she's taken them on music tour to France this week, and those guys will be partying so she must find them useful.

Have you tried healthy diet and fish/flaxseed oils? A clean diet seems to help people.

People on rosacea forums say their eyes clear when they discover their triggers.

Do you have an Optometrist you like? Some of them are quite good on this now. I know what you mean about these expensive consultants but a high street Optometrist can refer in the NHS to someone with an ocular surface disorder interest (IMHO, regional teaching hospital eye clinic) if they see continued problems after they've been monitoring and helping you for a while, esp with a history of RCE. Nice to see a doc who knows how to check a meibomian gland (2 fingers under lower eyelash line pressing gently upwards, pinching gently). It's helpful to check our eyelash bases for debris to see if the cleaning's working, if we can find an optometrist with a computer screen linked to the slit-lamp microscope. Or just a magnifying makeup mirror is good.

Some people over-do the cleaning and products and squeezing about and make their eyes a bit inflamed, hoping that more is more, but with rosacea we've found that less and just enough is more.

Have you got wraparound sunglasses? Eye protection seems to help keep a decent tear film although we are using frequent eyedrops still to keep the cornea good.

Have you just got eye problems again after a break?

**lahlah** · 21-Jul-2013, 15:36

Thanks for your suggestions about Optomotrist. Am overdue for a sight test. Had been putting it off, thinking my eye probs would dissipate but realise now they will always be with me, but hopefully manageable. I will make an appointment and pick his brains (see how good he is!).

Current eye problems not exactly after a break. Episodes just became more frequent and prolonged. I used to be able to persuade my GP to prescribe the occasional bottle of pred. drops which kept me going. Even in France, once, on holiday, without a prescription!

By the way, as a newby, am unfamiliar with lots of terms on here; what is a slit lamp?

**littlemermaid** · 22-Jul-2013, 00:30

Slit-lamp microscope is when we rest our chin and optometrist and ophthalmologist uses it to look at the parts of the eye. It's 'slit-lamp' because they adjust the light beam eg horizontal or vertical and different angles to see amazing detail in the curve of the front of the eye.

It's good to go with a list of questions http://www.nhs.uk/Conditions/Dry-eye...Diagnosis.aspx. Also good to have them describe their observations as they go along. I even like 'I don't know' because it means we're having a proper useful talk.

http://www.nhs.uk/NHSEngland/AboutNH...opticians.aspx Where there is 'clinical need', like you, the high street optometrist gives a free NHS eye exam for the CCG (these new Clinical Commissioning Groups). Clinical need like a history of RCE, courses of steroid Prednisolone prescribed by GP without monitoring for raised intraocular pressure (IOP) which is a risk for glaucoma (specified for NHS optometrist co-care monitoring), in hospital eye service for x years (includes discharged). The CCG or county hospital Patient Services has a list of high street optometrists registered for co-care. GP reception should know what CCG they are in... then you can check CCG website to see how they are getting on with organising this for us (started 1 April 2013).

We used the steroid FML (Fluorometholone) for flareups for years too, in tapering doses. FML does not absorb into the eye so much and may be safer, but then it has preservatives. People are also using cyclosporine now in UK but the docs have been a bit 'try it if you want to'.

Viruses eg adenovirus and common herpes virus can affect the MGs, unseen, so even now I'm not ruling it out. This explains some of the 'hum ha' approach one's expert can seem to have, which I quite like, as long as we get treatment guidance and come out feeling better.

It's nice to keep an open mind and seek out a possible dry eye doc if needed, in case an optometrist wants to refer you for more support. Maybe check out your NHS region websites on a 'who could I see if...' basis http://www.drfosterhealth.co.uk/consultant-guide/. It's nice to match up the names with the research interests on the NHS hospital websites. People often think that if they've paid Private there's a guarantee but the opposite can be true, unfortunately, although I love the access http://www.dryeyezone.com/talk/showt...4632#post84632.

Some people are helped by nutrition. Certainly a vet prescribes the same meds but something like vit C and zinc too is standard, plus checks for anemia. They are a bit ahead on this! SAAG has done well going gluten-free, for example - right click on her name for previous posts. We do better without sugar, refined carbs and clogging fats.

It might be useful to get an eye exam from an experienced eye surface disorder doc at some point, just to know if it is purely MGD or whether there is scarring and aqueous deficiency to think about, so you can carry on addressing all the factors and keep comfortable. Have you been to hospital eye clinics recently? Some clinicians are pretty good at this now, big change in the last few years, esp cornea teams in the teaching hospitals.

**lahlah** · 22-Jul-2013, 02:42

Goodness me, you know such a lot of useful stuff!

Just rang optician and got an appointment this pm. I usually see the Opthalmic Director, and am happy to see him again. Must bone up on your advice and be prepared.

First experience of eye hospital (in recent years): 2 appointments in Aug '12 at Rapid Response Clinic. I don't have a lot of faith in them, as I was discharged although I knew the problem hadn't cleared. (It seems that if they can't see anything - there is nothing to see). I went again in Jan '13, and was given short shrift by the doctor as I'd rung them direct for an appointment, instead of getting a GP referral. (Diagnosed then with adenoviral conjuctivitis, which the Pte Consultant later poo-pooed!). I know now that I didn't ask the right questions, through my own ignorance.

Through Feb - Apr saw an Opthalmic consultant privately, twice. (BGD diagnosis). Again, didn't ask the right questions. He did the slit test thing, but didn't tell me what he was looking at/for, apart from saying my left eye (the less problematical one) was quite dry. He is very pleasant and reassuring, but doesn't give out much information).

Re diet: I am a self-confessed yoyo dieter so sometimes eat healthily, sometimes not. Don't eat meat; do eat fish; don't currently take any supplements.

I'll finish now and bone up on your useful info for my appointment this afternoon.

Lesley

**littlemermaid** · 22-Jul-2013, 03:41

Lesley, None of this is about 'not asking the right questions' ((hug from all of us)). It's just a bit of a mess sometimes, and many docs are upset about the NHS and confused what their responsibilities and referral pathways are. Good luck this afternoon ~ report back to us! x

**lahlah** · 22-Jul-2013, 11:18

Had a satisfactory session withe the Ophthalmologist. He was extremely thorough; entered everything I told him about my eye condition into my records; did the slit test. Said I was doing everything right (heat/massage/clean/eye drops regime). He said, with my dry eye condition I should preferably use non-preservative drops as I shall be using them long-term. He recommended Thealoz or Celluvisc. (Any thoughts?). He said I should be able to obtain the latter on prescription, and to talk to my GP about it. (I am ancient and get free prescriptions). He said if necessary he would write a letter of recommendation to GP. (Not too sure if they would foot the bill - they are quite expensive). He said I should not keep an opened one in the fridge - I usually do, but only for the one day, there's a lot in one phial! He gave me a 30g free trial bottle of Blephagel - he said he'd been waiting for someone to turn up who could use it. My eyes had deteriorated some, so new glasses. Got second pair, funky purple sunglasses. Not exactly wrap-around but quite large, close fitting lenses, so better in car when aircon is on. Am feeling happier. I know my symptoms are so much less severe than many people who post - I can count my blessings.

**littlemermaid** · 23-Jul-2013, 00:37

He's good, isn't he? Are you going back regularly? You'll be able to nip in there if you have sudden eye pain and he will refer you to the best people. Optometrists can be very good on who's who and who does what.

Celluvisc is the old NHS standard and the GP should pay because of the severity of your RCE condition. It's not just 'dry eye'. Available drops will be listed in your CCG Formulary. There should also be a gel and usually something less viscous with sodium hyaluronate. The GP should have this on his computer, if he can work it. There will be someone in the GP practice who 'does the prescriptions' and they can tell us what's in the local Formulary, so can a Pharmacist, and they are actually online eg http://www.bucksformulary.nhs.uk/ The GP needs a hospital Ophthalmologist letter and prescription to get it through the CCG drugs committee if queried, though.

Maybe give the GP an authoritative printout about RCE (PatientPlus, NHS, Moorfields, Medscape) eg http://www.patient.co.uk/doctor/Recu...n-Syndrome.htm so s/he can refer to Ophthalmologists for a management plan. Ours started on about not paying for children's eyedrops available over-the-counter, but paid up after I showed him photographs of corneal melt from unmanaged 'blepharitis'. GPs are incentivised to reduce their drugs' spend, plus they have no eye training and most don't possess an ophthalmoscope, so we stand firm and educate them, which the good ones are happy about.

It's confusing because Primary Care referral pathways are best done through Optometrists because of this, although some GPs are buying in Ophthalmology services now, if we can arrange to have a flareup on the day the professional's in.

Here's a list of some brands http://www.patient.co.uk/medicine/So...r-dry-eyes.htm. These guys stock everything http://www.butterflies-eyecare.co.uk...epharitis.html but modern pharmacies are keen to order in from any supplier (except the supermarket ones are restricted to their negotiated suppliers) and head offices are telling me price is negotiable with the Pharmacist for a regular order.

We are doing well on Hyloforte as the thick eyedrop, also using Hylotears for frequent use, also flushing with Minims sodium chloride 0.9% vials if there's dust in the eye when travelling or something. But these are just brands.

Then we're looking at cost.

The Pharmacist said if I get a private prescription (�10 from GP), she (Lloyds) can offer 20% off (no VAT on private prescriptions plus negotiate a discount for a regular order http://customs.hmrc.gov.uk/channelsP...HMCE_CL_000121). A doctor's prescription lasts 3m but I'm thinking they will continue the discount on repeat since the eyedrops are OTC. Interestingly, a good Pharmacist should not keep selling this quantity of eyedrops for a condition without a doctor's prescription or reassurance the condition is supervised (Royal Pharmaceutical Society professional regulations) so a 'prescription' is needed for OTC meds from that point of view.

Then I found the NHS negotiated price (eg Hyloforte �11, OTC �17) listed in a Formulary and phoned the regional hospital Pharmacy Adviser (hospital Trust website). She is looking at the NHS Hospital Pharmacies supplying meds to us more at NHS cost where the CCGs won't pay. So I'll post up if we manage this.

Lesley, your cheerfulness is an inspiration. Sorry this is a bit 'too much information' but sharing our experiences might help people. We are indeed very lucky in this country x

**lahlah** · 26-Jul-2013, 14:59

I have been doing some pondering. I looked on the Formulary and found Celluvisc (single dose, PF) listed and have decided to write to my GP outlining my issues (Blepharitis, MGD and DES) and ask for Celluvisc on prescription. That way I explain things clearly without getting flustered (White Coat Syndrome!). I have been browsing the RCE forums and have decided that I probably don’t have that – my symptoms are so much less severe than those of many posters. A year ago I was diagnosed with marginal keratitis (before the Bleph and MGD diagnoses). I haven’t found MK anywhere on the DEZ site; is it a UK disorder only? What I don’t understand is how it is described as ‘a self-limiting condition; it certainly isn’t with me, it seems to rarely let up. I have had a pretty painful flare-up since the visit to the ophthalmologist earlier this week, not sure why. And I have resorted to the steroid drops for a few days, I’m afraid, because the eye is so painful.
I was so pleased having had about 10 days (quite a long time for me) free of it. Anyway, I'm using Theratears and gel at night. Once it has subsided again – I'll be back to my usual cheerful self!

**littlemermaid** · 27-Jul-2013, 01:54

Lahlah, Yes please. GPs do like a printout from somewhere they regard as authoritative. What you need for the GP might be National Institute of Clinical Excellence (NICE) guidelines for Primary Care (GP, optometrist) in UK Clinical Knowledge Summaries http://cks.nice.org.uk/dry-eye-syndrome#!topicsummary. Based on US clinical guidelines. Note GP responsibility to investigate differential diagnoses and causes of unresolved dry eye and cornea damage and refer on as appropriate. Note that 'keratitis' is an infection or inflammation for specialist emergency referral, managed in the NHS in remission by lubricant eyedrops. Are you still with an Ophthalmologist or do you need re-referral for flareups?

American Academy of Ophthalmology Clinical Guidelines and Preferred Practice Patterns http://one.aao.org/CE/PracticeGuidelines/default.aspx, see what's available in the search boxes

http://emedicine.medscape.com/article/1210417-overview Dry Eye Syndrome, by Dr Stephen Foster for Medscape, 2012.

Might be worth writing to the Consultant who diagnosed 'marginal keratitis' something along the lines of 'I am having difficulty finding out how to manage it in relapses, and would be very grateful if you would send me links to medical information'. I've done well with getting info on this approach, particularly if passed on to well-read Registrars and docs applying for Consultant jobs who are 'current'. (There is a short patient info leaflet about marginal keratitis on the Moorfields website but without a management protocol.)

Loving the idea of a UK-only disorder... maybe an NHS paid for out of compassion...

Whoever prescribes you steroid has a responsibility to arrange an intraocular pressure (IOP) check, according to the meds' sites eg within a week depending on the incidence of raised IOP for each med - NHS drugs guide for side effects http://www.nhs.uk/medicine-guides/pages/default.aspx. Also Electronic Medicines Compendium (eMC) http://www.medicines.org.uk/emc/. Haven't been able to access the British National Formulary.

High street optometrists are commissioned by the CCG (Clinical Commissioning Group) to perform primary care services like vision and eye pressure checks free in the NHS for patients with 'clinical need'. You are 'at risk of glaucoma' when on steroid eyedrops.

You are the responsibility of the Consultant until discharged, and there is an expectation that someone will send you back quickly if there are problems. Depending how they organise their hospital eye service, we can phone the Eye Clinic Triage Nurse or even Consultant's Secretary for help, maybe speak to a Registrar, or self-refer with a pain, sudden vision problem, or unresolved red eye. Regional Eye Clinics are much better organised for clear access with 24/7 cover (see hospital websites). Follow-up appointment for checks with the Eye Clinic Optometrist team gives fast access to the doctors if needed. Even after discharge, we are referred back on any 'referral pathway' eg GP or Optometrist for further treatment if there are 'changes'. It's a 'managing a busy clinic in the 21st century' thing.

Information is empowering, isn't it. Hope you can get comfortable again. A Symptoms Diary is a big help with White Coat Syndrome... I would nip into the optometrist for an IOP check if you've had to put yourself back on steroid eyedrops. A non-contact tonometer would be great, if they've got one, so they don't have to put anaesthetic drops in your poor stressed eyes. Good luck, Lesley. We do this for the team, docs included. It's important the CCGs fund essential eyedrops x

**lahlah** · 28-Jul-2013, 04:35

Thank you so much for your, as ever, invaluable information. More pondering is going on! The NICE site is useful. By the way, I gave misinformation: mixed my words - saw the optometrist, not ophthalmologist last week. Only used the steroid drops for a couple of days; am back to the gloop now and persevering.

**lahlah** · 19-Aug-2013, 11:40

Little Mermaid, I wrote to my GP 3 weeks ago, briefly outlining my 'conditions'; quoted the Formulary and NICE recommendations (thank you for your suggestions) and asked if he would prescribe Viscotears PF, as recommended by the optometrist. Heard nothing so rang up today, to be told the scrip was waiting to be collected (since 31 July!). I decided to keep a calendar log - I put 'GI' on any Good Eye Days - of days when my eyes are comfortable, and no corneal inflammations. There have only been 2 during August so far. I know it's chronic rather than acute, but even so ... I've made an appointment on Thursday to see the Consultant again. this time, I hope to be more informed; I hadn't come across this site the last time I went, beginning of May. Not completely sure he will be in tune with dry eye problems. His specialisms appear to be Cataract surgery, Glaucoma, Laser vision correction, Medical retina. Although a different site quoted Corneal and external eye disease, as a special interest. I felt his approach was fairly casual and as I knew NOTHING, I didn't learn very much from him about managing the conditions. I wonder if he will think I'm being uppity if I ask for a TBUT test? I have these imaginary conversations in my head, and he replies, 'What do you want that for?'! Oh, to be one of those assertive, demanding people! I am a bit nervous about a holiday in 10 days time. We are going on a coach tour of various American National Parks. It will be very hot, plus two weeks of an air-conditioned coach. My new prescription sunglasses (not wrap-around but big, snug-fitting lenses) should help. Thanks again for all your helpful suggestions.

Lesley

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