Does oil visibly come out with lid massage?

[irish eyes]

Hi Irish Eyes,

Good to hear from you. I haven't actually bought any of the products that Michel Guillon recommended, I'm still thinking about what to do.

I was getting mixed up, he said to use Optive, not Active. I'm sure he said it was a spray but now I'm looking on the internet and it's drops. Michel says it has an oil component. Eye Logic/Clarymist seemed to irritate,


Anyway, at the very least, I will definitely try Theratears, as many people seem to recommended it, and I haven't tried that category of artificial tear yet.

Hello again

Optive went through my mind actually but I dismissed it because of his recommendation to use the Theratears products. Presumably he means Optive as well as these? That does sound to be a lot! Optive has a disappearing preservative - you can read a few reviews on it here:

http://www.dry-eyes.co.uk/acatalog/Optive.html

Are your eyes better on the days that you are not working in the open plan office?

During the cold weather, my eye consultant had his radiator turned up so high that I couldn't cope with it - it amazed me that he hadn't thought about that beforehand.

[littlemermaid]

Management of dry eye in UK - suggested current recipe

NHS teaching hospital ophthalmology unit interested in dry eye with regular follow ups, history on file (vision, eye surface, tears, lids; prescription if needed, monitored for side effects by hospital optometrist, dose tapered by ophth). Continuity is important because NHS file is paper not computerised, when discharged turn up again when need to.

+ Interested specialist optometrist (private unfortunately, likes updating skills and working with ophth dept in hospitals) for regular monitoring and help with lubricating drops, see your eye on screen, talk about ophth, prescription wraparounds, moisture goggles. If worsened, optom refers to above NHS eye clinic or you self-refer to triage nurse as 'worsened, Mr X's patient'.

+ Interested GP to refer for related condition tests (thyroid, rosacea, hormonal, allergy, bloods), all above letters copied to GP file for you to read.

Type up full history (own up now - drugs, laser, acid peel, anything else). List of questions written down. (If private consultation, post these first - expect them to read up before visit so you get money's worth.)

Imagine you were the professional who wanted to help, what a good patient would be like, what prevents that. What they might unfortunately be thinking but can't admit: don't know what it is, don't know how to treat, hope it might go away (bacterial, allergic), not that bad anyway (doesn't lead to morbidity, sight loss [untreated, yes it does]), not enough clinic time so prioritise on fixable. Private sector: sorry you've got this, got no backup staff here and I know you can't afford tests, oops don't know current low level maintenance advice on dry eye conditions, she's just here for an opinion anyway and that was it, kerching £.

Ignore dragons on desk unless they are nice/sensible (tap them for advice, get a vibe on their opinions about clinicians). They are not qualified to do anything except type - 'shouldn't we ask a medic? they should not ask you to make that sort of decision...'

Good questions for professionals, ask for general advice: who specialises in this? where can I get long term treatment, preferably NHS? what would you do if you had it? is there anything you think I'm not doing now that would help (environment, diet, regime, glasses)? Stress: this is affecting my livelihood, disabling.

As Irish eyes says, it gets personal - after trailing round the units begging for help with diagnosis and regime you find people you like, even trust (littlemermaid and I have issues but even we trust/worship the one guy, quite like some of the others, keep checking treatment in case something's missing). If your research turns up a consultant or private eye clinic you like, phone private secretary (c£180 assessment). As Chemia says, keep reading (I'd have thought some professional should have suggested punctal plugs by now, don't touch Azasite without ophth - you don't have blepharitis, not approved here, Fluorometholone is prescription steroid - needs RCOphth careful handling). Sent you personal message - your questions about NHS units. God bless.

[redandunhappy]

Firstly, thank you all so much for your very kind and thoughtful responses. I am extremely touched by the help people give each other on here on this forum.

SAAG - thank you so much for your reassuring words re goggles. Poor you having to deal with wearing them in front of tons of new people every day...You have my utmost sympathy. Sounds like you're being very strong and coping with it really well though.

Chemia - thanks for the in-depth article - not sure I understand some of it, but it has a lot of useful info in there. I've been looking up some of the terms and slowly it's all starting to make more and more sense. I haven't tried saturation dosing, but it sounds sensible...like you, not sure I could really manage it though...

Irish eyes - thanks for info re Optive. Michel has recommended I use Optive 3 times a day - particularly before going into air con office and then Theratears throughout the day. It is a lot to keep up, but he says I should do it for a few weeks initially. I need to order all the products, then I guess I'll get started.

Yes eyes are much better when at home and not at work or in air-con environment. But they still trouble me a lot of the time - just feeling slightly sore for one reason or another (which I'm still trying to work out)

Little Mermaid - thank you so so much for your exhaustive list about how to cope with the medical profession. I really appreciate you taking all that time to come up with all of that advice and suggestions, which I will really try and take on board. Will reply to your personal message re NHS units.
Re Azasite - Just wondering why do you think not a good idea to use without an opthamologist overseeing it? (if follow instructions from various papers) I would still very much like to try it as supposed to be quite successful for some people with ocular rosacea and posterior blepharitis/MGD, which is exactly what I have...
Although my glands are apparently not very blocked - there are some that are blocked and my eyelids are quite inflammed, so I think it could help with the inflammation.

Plus, my lower eyelid rims are so red - I was thinking that Azasite might really help with that...no matter what I do, even if my eyes are feeling their best (for me) and veins are not too prominent and red, my red eyelid rims make me look like a rabbit.
I'm not sure if it's cause of eyelid inflammation, or vascularisation in my lower eyelids caused by ocular rosacea...but would really like to fix it.
I have dark shadows under my eyes (genetic), so combined with the red eyelid rims, I don't look great.

Anyone have any ideas about permanently red eyelid rims? Has anyone else had the same thing and managed to improve them?

[littlemermaid]

Azasite in UK

don't touch Azasite without ophth

Sorry, worried your ophthalmologists packed you off with 'just try different drops', and absolutely infuriated (hence ranting post about NHS) that you are forced into this position. Hate this lack of NHS attention on dry eye - haven't we paid enough taxes? Grrrrrr.

Azasite is still off-label prescription for UK in final trials at phase 3 (phase 2 proven for anterior blepharitis, phase 3 trialling for posterior blepharitis: I'll post ref if I can ever find it again). Thanks for your Eyeworld article link. We are talking about Azasite, but if she gets worse the next step will be punctal plugs. Less intervention, more recovery. Search 'AzaSite side effects' to see why you need monitoring. I do think it's worth trailing round again to find a decent ophthalmology unit for the long term unless you're OK where you are.

http://www.osnsupersite.com/view.aspx?rid=60419 Off-label use of AzaSite (azithromycin ophthalmic solution 1%, Inspire Pharmaceuticals) will allow major improvements in the treatment of meibomian gland dysfunction and blepharitis, Eric D. Donnenfeld, MD, OSN Cornea/External Disease Board Member, said. Topical azithromycin is currently approved for bacterial conjunctivitis. “Meibomian gland dysfunction is as important as aqueous deficiency dry eye in ocular surface disease and has been grossly understudied and undertreated,” Dr. Donnenfeld said. “The next decade, I predict, will be the decade of meibomian gland dysfunction in blepharitis management to improve ocular surface disease and improve visual outcomes. [AzaSite] has really revolutionized the treatment of meibomian gland dysfunction. We’re now treating these patients with one drop a day and getting outstanding results.” Off-label use of AzaSite (azithromycin solution 1%, Inspire Pharmaceuticals) showed promising results in treating blepharitis, as shown by images of the lid margin before and after treatment. AzaSite is currently approved for bacterial conjunctivitis. Azithromycin may be applied topically or massaged into the lids, Dr. Hardten said. “A lot of patients have had good success with once-a-day AzaSite for blepharitis,” Dr. Hardten said. “We typically rub it into the eyelid margin, although some people use it as a drop and then massage the lid.” Dr. Donnenfeld cited data presented in a poster at the 2009 Association for Research in Vision and Ophthalmology meeting showing that azithromycin significantly improved meibomian gland secretion. Dr. Donnenfeld is a consultant for Abbott Medical Optics, Alcon, Allergan, Bausch & Lomb and Inspire Pharmaceuticals.

Isn't it nice to hear them getting excited, esp about the profits. Antibacterial eyedrop, improved absorption, will penetrate the eye surface wherever you apply it and stay there - therefore need professional advice on dose according to symptoms, pulse therapy US style, monitoring; if there is bacterial infection.

http://www.osnsupersite.com/view.aspx?rid=61955 "In the 4-week trial, AzaSite showed statistically significant improvements compared with vehicle for reducing several signs and symptoms of blepharitis at various time points; however, statistical significance was not achieved for the primary endpoint of mean lid margin hyperemia."

http://www.dryeyezone.com/talk/showthread.php?t=5420 Here's some AzaSite experiences.

[redandunhappy]

AzaSite in the UK

[QUOTE=littlemermaid;53084]
Azasite is still off-label prescription for UK in final trials at phase 3 (phase 2 proven for anterior blepharitis, phase 3 trialling for posterior blepharitis: I'll post ref if I can ever find it again).

We are talking about Azasite, but if she gets worse the next step will be punctal plugs. Less intervention, more recovery. Search 'AzaSite side effects' to see why you need monitoring. I do think it's worth trailing round again to find a decent ophthalmology unit for the long term unless you're OK where you are.

[QUOTE]

Hi littlemermaid,

Thanks for all the really useful info.
I'm a bit confused - when you say Azasite is off-label prescription for UK, do you mean it is actually available, but is not licensed for use for blepharitis? It was my understanding that it is not available here at all.

And you mentioned that you are talking about Azasite for your child - can I ask how will you get hold of it?
Do you think it will be available here soon? If that were the case, that would be fantastic.

Definitely think my opthamology unit (at Royal Free, London) is no good. Will search around for something better - might start with John Dart at Moorfields (if possible) then Western Eye Hospital or John Radcliffe, as recommended.

Thanks again for your help

[irish eyes]

when you say Azasite is off-label prescription for UK, do you mean it is actually available, but is not licensed for use for blepharitis? It was my understanding that it is not available here at all.

Hi

I know I'm `butting in' here but it's my understanding that Azasite isn't yet available in Europe. Unlike Restasis, doctors cannot prescribe it as a `special'. I would love to be proved wrong though....

Useful link re / John Dart:

http://www.dryeyezone.com/talk/showt...ight=john+dart

[littlemermaid]

Sorry, can't get excited about Azasite or Azyter even tho' -

Posted on the OSN SuperSite May 11, 2010 - Topical antibiotic effectively treats pediatric rosacea: PARIS — Topical azithromycin provides safe and effective treatment of pediatric rosacea, allowing for an easier and more patient-friendly schedule of administration, according to a study.

"The efficacy is excellent, superior to systemic antibiotics and topical corticosteroids," Serge Doan, MD, said at the meeting of the French Society of Ophthalmology. The study was conducted retrospectively in 18 patients between the ages of 5 and 15 years. They were administered Azyter (azithromycin 1.5%, Thea) drops twice a day for 3 consecutive days. The treatment was repeated at intervals of 10 days and then 15 days until no residual sign of inflammation was seen. "After 1 to 2 months, the hyperemia had disappeared in all eyes, and between 3 and 5 months, there were no more corneal infiltrates. Eyelid inflammation had a longer course of recovery," Dr. Doan said. All cases were treated at 10 months, and no recurrence was reported.

Life in the fast lane, off label I presume. Absorption is scary for us - reactor - surely would expect to see big improvement on any antibacterial/steroid combo from baseline? It's really not all that, is it? See dryeyetalk thread in above post.

Following Prof. Baudouin and team very attentively tho' for new work eg http://dryeyedigest.blogspot.com/200...-eyedrops.html, esp on corneal surface and gland changes due to preservatives.

[littlemermaid]

Azyter trial at Thea Laboratories May 2010

If anyone's that enthusiastic http://clinicaltrials.gov/ct2/show/NCT01089608

[redandunhappy]

Clinical trials in France - it's tempting to try and get involved, but I doubt they'd want anyone from the UK.

My understanding also is that Azasite is not licensed here at all yet. I'd love to be proved wrong too

Irish eyes - I thought that Restasis wasn't available at all either...Is that incorrect? Is it licensed for something else here?

[irish eyes]

It is a really confusing picture - I agree.

For some reason, Restasis can be ordered on a `named patient basis' and it can be obtained by one of the international pharmacies. I know of the pharmacies is called John Bell & Croyden but I cannot recall the name of the other people.

My consultant wrote a prescription for me to get Restasis (the real stuff) but it was going to be prohibitively expensive so I decided not to bother. I might have pursued it if the consultant himself thought it was going to be the solution but I don't think he was convinced that it would be right in my case. In all honesty, I was the one doing the asking - his attitude was probably one of "....why not let this poor woman try it because nothing else has helped.....".

Azasite on the other hand seems to be an unknown quantity; I think my consultant would have been in support if he had known anything about it but he didn't.

I emailed Inspire Pharmacy earlier today just to check my facts. I said:

"Am I right in thinking that Azasite isn't available in Europe. I live in the UK and would like to know more etc..."

This is their response

".......That is correct; AzaSite is not currently available in the UK. Our partners, InSite Vision are currently working on distribution outside North America and may have more information for you!...."

I don't think it would do any harm to mention it to your consultant to see if there is any insider info on the topic. I know that a `problem' for doctors can be the information on treatments that we get from the internet and some can be a bit snooty about it but it's always worth pursuing. (Have we anything to lose......?)

[redandunhappy]

That's really interesting. I know John Bell & Croydon, they are based on Wigmore Street, near Selfridges. Can I ask how much Restasis was going to cost you?

And potentially good news about Azasite being distributed outside of North America. Do let us know if you hear back from Insite Vision with any good news.

Apologies if I've already asked you this, but can I ask which NHS unit you go to?

Many thanks

[irish eyes]

A consultant working in a private capacity prescribed the Restasis. It's not available on the NHS so it would be unethical for any NHS doctor to prescribe it.

You will know that the NHS will use generic brands where possible (to keep the costs down). There is a Moorfields version but it's much stronger than Restasis so I would imagine that the NHS could prescribe that.

Costs of Restasis? From memory, it was something in the region of £950 for a couple of months supply. That is what Boots were going to charge and they insisted it included a discount. The poor pharmacist was in a real state when she tried to tell me how much it was going to be - they were the most expensive eye drops she had come across and she almost drew a crowd with her gasps!

I daresay that John Bell & Croyden could be cheaper but I couldn't say. At the time, I didn't know about these other 2 pharamacies so they might have been more reasonable. You still needed a precription though.

Had you thought about any of the internet companies that other members have used? I've not used them so I cannot comment.

Certainly - any news back will be shared. I have emailed to thank them for their response and to ask how we can find out when there is any good news. They probably don't want lots of people sending them emails constantly so I wonder if there is any mechanism for this. They have changed their site and the facility used to exist.

[redandunhappy]

Can't believe Restasis was going to cost you £950 for a month. That's outrageous. No wonder you didn't want to pay it.

That's interesting that there is a Moorfield version of Restasis. I didn't know they made their own drugs.....do they compound them on site? Were you not tempted to try and get hold of it from them? Or is it too strong?

To be honest, I haven't really looked at internet options for Restasis as I'm not sure whether it would help me. Perhaps I'm wrong, but I thought it didn't help much with evaporative dry eye and blepharitis caused by ocular rosacea, but in fact the link you posted earlier seems to suggest it does help those with ocular rosacea & MGD:

http://www.revoptom.com/content/c/15811/

So I'm a bit confused about Restasis, but worth looking into. I guess I've been thinking that AzaSite is the silver bullet, but perhaps Restasis might be an option.

Thanks so much for staying in touch with InSite Vision

[Debk]

Hi.

I have a prescription for Restasis sitting on my nightstand. I haven't tried it yet because my eyes are ok right now as far as redness and inflammation, and I guess I am afraid that it will make me flare up....and I will be back to square one with horribly red, inflamed eyes.

I was told that people with ocular rosacea can respond favorably to Restasis because it helps inflammation.

[redandunhappy]

Just been reading in Dr Latkany's book and the Restasis website. It seems the main feature of Restasis is that it helps patients produce more of their own tears.

From the website "RESTASIS® is indicated to increase tear production in any patient whose tear production is presumed to be suppressed due to ocular inflammation associated with keratoconjunctivitis sicca"

Can it be help people with evaporative dry eye (e.g. caused by MGD/posterior blepharitis), who don't have an acqueous deficiency?

Maybe as DebK says, perhaps because it's an autoimmune drug it generally suppresses inflammation?

Any more thoughts? (I'll start a new thread)