Does oil visibly come out with lid massage? [Archive]

redandunhappy

10-May-2010, 15:55

Hi all,

Should you see oil coming out of the glands when you do lid massage?

The reason I ask is that doing warm compresses does seem to make oil come out (my vision goes cloudy for a bit), but when I try and massage the lids - either with a cotton bud (Q tip) or my fingers or, I never see anything at all.

I have been told that my my oil is quite clear, so I don't think my glands are really clogged, just a little underactive (cause of ocular rosacea and inflammation)....so should I stop trying to get more oil to come out?
Is it possible that mine could be coming out with just the heat?

What should I actually see when doing the lid massage with a Q tip?

Very grateful for any advice...

littlemermaid

11-May-2010, 05:29

Hi! If your oil is clear you might see tiny dots on inner lid edge with x10 magnifying mirror (Boots, Superdrug). I have never managed to see 'toothpaste consistency' but have seen 'baby oil consistency' and some interesting 'plugs'. Current techniques we have been advised to try: pull upper lid away from eye surface and pinch edge systematically, or stretch upper lid with finger, draw another finger along lid edge starting nose corner; pull lower lid away from eye surface and pinch systematically starting nose corner. Look at internet pictures of where glands actually are and imagine what you would do to squeeze oil out. Just to confuse you even more: one Dr Latkany thread asks why a patient was habitually emptying out the oil they needed; some here get more comfort from cold compress with rosacea inflammation?

Interested: What is actually making your eyes feel better? Have you found a comfortable oily tear drop?

irish eyes

11-May-2010, 09:12

Redandunhappy

It depends on what you mean by massage.

I have to use a fair bit of pressure on my lids to unclog the glands. At times, it has `toothpaste consistency' but in recent days, it has been a yellow, watery discharge. I've no idea why it varies and the consultant cannot advise on any new methods of dealing with it - just more of the same.

redandunhappy

12-May-2010, 12:36

Hi,

I knew I could rely on you two to reply! Many thanks for your advice and help again.

Littlemermaid - I'll buy a magnifying mirror and check what is happening, but can you see anything without it?

Re technique, I've tried a couple of times to pull my lid away from eye, but I'm really hesitant about it as I don't want to do any damage to my sore and sensitive lids. Which technique do you use?

Irisheyes - which technique do you use? Can you see the discharge very easily?

Might it be the case that warmth is enough for me to get my oil flowing? In which case I don't need to do the massage?

Not sure that anything is making my eyes feel better yet....I haven't found a comfortable oily tear drop - unfortunately the only one I know to be available over here is Clarymist and that seems to irritate my eyes. Of all the ones I've tried, Systane (Irish eyes very kindly sent me some vials) seems to be the best - doesn't seem to irritate, but on the other hand not sure it is doing much.

I'm trying to try one new thing at a time, so at the moment have just started again with warm and cold compresses.....will see how I get on. I think it does help a bit, but not sure if it's the cold or warm element or both......will do 2 weeks of both, then 2 weeks of just warm, then 2 weeks of just cold...

There are so many factors affecting things that it's very difficult to separate them all out and know what is making things worse or better....Air conditioning, eye drops, eye make up, facial products, warm and cold compresses, eye scrubs...

For example, most of the week I am at work in a horrible air conditioned office which seems to really irritate my eyes. So if I try new eye drops in this environment, I won't know whether any potential irritation is caused by the drops or the air con.

I think it's best to try new things in 'control' conditions - i.e. no air con, no make-up, no products on face, but that's very difficult to achieve.

irish eyes

13-May-2010, 12:04

Hi,

I knew I could rely on you two to reply! Many thanks for your advice and help again.

Littlemermaid - I'll buy a magnifying mirror and check what is happening, but can you see anything without it?

Re technique, I've tried a couple of times to pull my lid away from eye, but I'm really hesitant about it as I don't want to do any damage to my sore and sensitive lids. Which technique do you use?

Irisheyes - which technique do you use? Can you see the discharge very easily?

Hi there

Your question to Littlemermaid - I don't think I would manage without a magnifying mirror.

Your question to me about technique - I suggest you try only the lower lid to begin with.

You may not be able to see much in the way of blocked glands or white spots because the lower lid is often thinner than the top.

:) First bathe the eyes with warm water, clean round the lashes to get rid of any gunge.

:D Then (this is the way I do it) cover your thumb / nail with a piece of tissue. Place your thumb nail against the lower lid - so the nail itself is against the skin - just below the lashes.

:eek: Exert pressure - visualise where the glands will sit beneath the skin. Nudge your thumb nail along the lids a few times. This should dislodge some of the oil. You may need to do it a few times to get the hang of it. Clean the eyes afterwards.

Scroll down this site to the photos of the eyes - the 2nd image shows blocked and inflamed glands. Can you imagine unblocking these glands by gentle force? Q tips are fine but they break and shed fibres - that is not to say that I don't use them. Is this the same method you use?

http://www.eyesite.org/blepharitis

littlemermaid

14-May-2010, 06:00

Littlemermaid notices huge difference at school in certain rooms: ICT (air con, also doesn't blink enough) and some classrooms (dry air) - eye probs, headaches, goes out to use drops. Overnight in hospital air con was unbelievably dry, longing for fresh air and rain, had to stick head out of window, medics gasping in heat. Optom said her skin dessicated every day. Environment is a big factor for us - humidifier in bedroom makes huge difference to comfort. Can you have humidifier at work? My husb is an IT manager guy and this is what people are doing now (health & safety, you know).

irish eyes

14-May-2010, 07:32

There are so many factors affecting things that it's very difficult to separate them all out and know what is making things worse or better....Air conditioning, eye drops, eye make up, facial products, warm and cold compresses, eye scrubs...

For example, most of the week I am at work in a horrible air conditioned office which seems to really irritate my eyes. So if I try new eye drops in this environment, I won't know whether any potential irritation is caused by the drops or the air con. .

I don't think the air conditioning can be doing your eyes any good at all.

How do you heat your home? I know that if I go to other people's homes and they have the heating on - then it's a nightmare for me. I've been in hospital twice in the last 6 years and on each occasion, I've been more anxious about the environment than the actual medical procedure. :eek:

We have woodburning stoves at home and if the room is too hot, I place bowls of water around the room so it gives off a bit of humidity. I've thought about buying a little humidifier but the water works just as well.

Does your employer know about the problems? Might there be a simple solution with office space? Is there anyone at work you can talk to in confidence about?

Sorry - I don't mean to appear like an official inquisitor!

redandunhappy

16-May-2010, 17:02

hello again,

Irish eyes - Thank you so much for taking the time to describe the technique you use. I've been using the first technique described in Dr Latkany's book (warming with a rice baggie, then using cotton buds dipped in boiled water to exert pressure under the eyelid, then cleaning the eye - and then I've been doing a cold compress for 5 mins as well), but as you say, perhaps I ought to exert a little more pressure, so will try your thumbnail technique.

I don't mind your questions at all - you are only trying to help me. I have central heating at home, but I have a humidifer that I use in different rooms according to what I'm doing. It's less of an issue now that the heating isn't really on, but the humidity was between 25-30% in the cold months.

Little Mermaid - thank you for your suggestions re work (and Irish eyes also). I did my employers to test the humidity in the building a few months ago and it was very low - around 20%. But unfortunately on my floor and in most of the building , there is no way for them to control the humidity. I did speak to the health and safety advisor, and she said that although it's recommended that the building humidity is between 40-60%, it's not the law. I could have probably made my particular department buy me a humidifier, but in the end it was quicker and easier for me to get one myself, which I did.

However, I work in a big open plan office, so my little humidifier can't really do much to the overall atmosphere....I think it helps increase the humidity in the tiny space around it, so I do try and sit right underneath it, but still it doesn't work that well, and in addition isn't that pleasant having a stream of cold air in your face all the time. But I think my eyes might be even worse if I didn't use it...

What I really need to do is find a good drop to use (Irish eyes I do think systane might be helping a little actually, so thank you) and I'd also really like to try AzaSite....if you now anyway of sourcing it, please do let me know.

Thanks again for your help and support both of you.

irish eyes

17-May-2010, 06:50

Hi

I hope you can get the hang of things - I think this is something that eye doctors should really show patients how to do. It's all very well having the procedure done for you followed by comments on how easy it is for you to `do at home'. Well it might be - once you know! :confused:

Pleased to hear that the Systane might be helping a bit. Your question about Azasite; it's not available in the UK (as you know) and I'm not aware of any plans for it to be marketed in Europe. Did you see this thread on the same topic?

http://www.dryeyezone.com/talk/showthread.php?t=10962

It's tough about the office environment. If I ever have to go on training events away from the safety of my own little office - I always grab a place near the door so at least I don't get feelings of being hemmed in - should I need to leave because the environment is too stuffy. I sometimes take one of those facial sprays with me -the effects are only short lived but it can be better than nothing. (Isn't this all a pain? As if life wasn't hard enough).

redandunhappy

18-May-2010, 11:05

Hi Irish eyes, thanks for alerting me to that thread. Unfortunately, I don't think the product sold by the site that Sazy had found is the same - apparantly it doesn't have the same delivery system (I have messaged Sazy privately and she told me she's tried it, but it wasn't thick enough)

So back to square one re sourcing it here - I will try and find it on the internet and post back if I have any luck...(not holding out too much hope)

By the way have just been to see Michel Guillon in Sloane Square - he has suggested a whole new regime for me including Blephaclean, Theratears gel, Theratears eyedrops and Active (a spray which does have on oil component).

It was good to finally speak to a professional that understands my symptoms, but a little bit depressing too because he told me the new veins in my eyes will never go away although they should become less pronounced (It's the deep vessels which are permanently dilated now - I only have one noticeable one in each eye, but I really hate them).

Also he says that my glands are mostly not blocked, my oil is of an ok consistency but I am just not producing enough of it, resulting in evaporative dry eye.....so he said I'm wasting my time doing warm compresses (and could be aggravating my irritated eyelid margins)...but I'm not sure whether this is the best advice because I do definitely notice oil coming out if I heat my eyelids and my eyes definitely look and feel better aftewards. But on the other hand, I do have ocular rosacea so perhaps it will not help my inflammation in the long term...hard to know what to do for the best...

I forgot to ask him, but I still wonder what is causing the inflammation in the first place and whether it is my ocular rosacea or not...and whether my mild MGD is being caused by the inflammation or something else...

Sorry for rant, I am just thinking aloud!

littlemermaid

18-May-2010, 12:22

Just to confuse things again, littlemermaid didn't like cleaning products that seemed to strip surface of tears: seemed like saponification process described here by Dr John Hovanesian, Harvard Eye Associates, in Dry Eye Treatment part II on YouTube http://www.youtube.com/watch?v=HSF45Wx9BOE&feature=related

Also had veins across iris, now reduced to invisible ghost vessels by FML regime, successfully tapered (eyes maintained by Celluvisc). Only an ophth can prescribe. Have you tried Western Eye Hospital or John Radcliffe, or are you happy? :)

redandunhappy

20-May-2010, 13:04

Hi littlemermaid, thanks for the link. What a great doctor, I ended up watching the whole lecture....if only I could see someone like that here.

Fortunately I don't think saponification is a problem for me as my oil is apparently clearish (just don't have enough of it), but it's interesting to see what can happen if you have oil of toothpaste consistency and then you start add chemicals to the mix. Sounds like it can make things so much worse, so I hope people know about it.

But I appreciate you alerting me to cleaning products. I've read Dr Latkany's book and he doesn't like scrubs or cleaning products either. Keep getting conflicting advice so not sure what to do - particularly regarding warm compresses.

So in answer to your question, I'm not happy at all. Would be great to get a second opinion from someone else who really knows what they are talking about. Have you been to the John Radcliffe or Western Eye Hospital? If so is there anyone there that you recommend? Did you go privately or get an NHS referral?

Your poor child having to deal with this horrible condition - it's bad enough as an adult, but must be awful going through it as a kid. Very glad to hear you have it all under control though. And very pleased to hear that she no longer has visible veins on iris....and that's very encouraging for us folk who think we are stuck with them forever...I suspect I may be, but I hope at least to improve their appearance.
What's FML by the way? I've been racking my brains but can't think...

Thanks so much for help and support again

irish eyes

20-May-2010, 14:39

I've read Dr Latkany's book and he doesn't like scrubs or cleaning products either. Keep getting conflicting advice so not sure what to do - particularly regarding warm compresses.

So in answer to your question, I'm not happy at all. Would be great to get a second opinion from someone else who really knows what they are talking about. Have you been to the John Radcliffe or Western Eye Hospital? If so is there anyone there that you recommend? Did you go privately or get an NHS referral?

Hi there

I've reached the conclusion that `cleaning products' are best left alone. I've swapped and changed so often and always return to the old salt & water trick.

Michel Guillon seems to have set you quite a regimen there - I'm not saying he's wrong but I wonder if all of it is necessary? When you say Active spray, is that something like Eye Logic (used to be called Clarymist). What are his goals?

Have you discontinued with the lid massage / expressing?

redandunhappy

20-May-2010, 16:44

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, although I might try once again before finally ruling it out...it does have a preservative in it (which apparently evaporates before hitting the eyes) which I supppose is the problem. But so does Optive.

I do wonder too if all of the things he recommended are necessary. His goal he said was to make my eyeballs as wet as possible all the time (particularly in dry office environment) to try and reduce the inflammatory process going on in my eyes and eyelids.
Dr Latkany seems to initially try to get to the route of the problem if at all possible rather than flood the eye with artificial products. Trouble is I'm not sure how you can fix your meibomian glands not producing enough oil.

I'm sure that when my eyes feel dry, my eyelids start feeling sore too (apart from the friction between dry eyeball and eyelid, there is some sort of feedback loop I think?), so perhaps it is sensible to try and make my eyes as wet as possible for a few weeks, and then the inflammation in my eyelids will decrease too.

He did say that the regime can be tapered if successful after a few weeks. To my horror, he said that if that all didn't help, I'd have to wear moisture goggles at work! There is no way I can do that...I work in a big open plan office - it's bad enough having to field questions all the time about my humidifier, there is no way I can sit there looking like I'm about to go snorkelling!!!!

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.

I haven't stopped doing my warm and cold compresses/massages . I remember now, as well as telling me not to do warm compresses, he also told me off for using frozen peas from the freezer covered in kitchen roll for my cold compresses. He said it was dangerous to use something so cold...perhaps he has a point, but I've tried one of those gel masks that you put in the fridge and it's barely cold for more than about 1 minute! Any suggestions anyone?

Anyway I digress...I'm going to continue to do both compresses for another few days - until I've been doing them 2 weeks - then I'm going to try just cold compresses for 2 weeks and see what the difference is.

Your help is much appreciated again....thank you

Chemia

20-May-2010, 17:36

Hopefully this article I attached by Dr. Gilbard will help you understand dry eye and the treatments. One of the things I remember an eye doctor telling me and it is also mentioned in the article is "saturation dosing". This is where instead of applying one drop of lubricant, you apply several over a 5 minute period. My doctor explained for example after 4 hours to apply, lets say systane, drop by drop for 5 minutes instead of just one drop. I really don't follow that procedure because I can't seem to spend 5 minutes dropping lubricants but it could be something you may try. He explained it by saying that by applying lubricants every 4 hours, you are actually helping your glands produce more tears since you are not overworking them. I hope that makes sense.

http://www.dryeyeinfo.org/Dry_Eye_In_Depth.htm

SAAG

21-May-2010, 00:29

To my horror, he said that if that all didn't help, I'd have to wear moisture goggles at work! There is no way I can do that...I work in a big open plan office - it's bad enough having to field questions all the time about my humidifier, there is no way I can sit there looking like I'm about to go snorkelling!!!!

Not sure what's available where you are for goggles... is there anything similar to the Wiley's that we have here? The sunglasses style doesn't look too bad, actually...

I'm a goggles-at-work girl these days... I can totally relate to feeling horrified at the thought... but you get used to it... I wear either my Wiley's or MEG's...

I have not only my co-workers to see me in them, but the tons of strangers every shift, since I work with the public... I would think only dealing with co-workers would be easier since there is a limit to how many people would ask what's wrong... once they are told, there won't be anyone else left to ask...:o

I must say though, it's starting to get to me... the whole explaining to people why I'm wearing them... had about 5 customers asking me about it tonight... they were very nice and all, but seeing the huge look of sympathy on their faces gets me down at times... it just reminds me how much this totally sucks... weird.. sometimes sympathy is comforting... makes you feel like someone understands you... but other times, not so much... so anyhow, I can totally understand your horror:o

But on the bright side, although it's tough sometimes to explain about your eyes when you'd rather just forget about it, I haven't had one single person be unkind about my wearing Wiley's or MEG's...

Anyhow, hopefully you won't end up having to wear the goggles... but if you DO, you'll survive... it seems like the most horrible thought to be seen like that, but it's the first time that's the hardest... it gets easier after that every time you wear them... :cool:

irish eyes

21-May-2010, 04:24

littlemermaid

21-May-2010, 06:04

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

22-May-2010, 06:15

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

22-May-2010, 08:44

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

23-May-2010, 11:58

[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

23-May-2010, 15:51

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/showthread.php?t=11348&highlight=john+dart

littlemermaid

24-May-2010, 04:47

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/2009/11/abstract-naaganaabak-eyedrops.html, esp on corneal surface and gland changes due to preservatives.

littlemermaid

24-May-2010, 07:18

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

redandunhappy

24-May-2010, 07:49

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

24-May-2010, 10:12

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

24-May-2010, 10:48

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

24-May-2010, 11:09

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

25-May-2010, 17:03

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