Private opthalmologist in England specialising in ocular rosacea

[redandunhappy]

And you don't find that irritates at all?

[NotADryEye]

No, I don't find a problem at all with 2 minutes. In fact, I prefer exactly two minutes at 7:30am and again at 9pm. That seems to work the best for me.

I put my microbead mask in a lint-free bag for glasses and then microwave for 27 seconds. After I use the bag and the microbead eye mask, I spray them with 91% rubbing alcohol. When they are dry I wash the bag with baby shampoo and let it dry again before using. I have two bags that I rotate every day. And two sets of microbeads that I wash about once a week. These take a long time to dry.

[redandunhappy]

Thanks NotADryeEye. Trouble is warmth is not a good idea for anyone with rosacea as heating flushes the skin, and this increases vascularisation, which further exacerbates the problem. Same principles applies with ocular rosacea.

And personally I've found heat to cause more eyelid swelling, which is the very last thing I want to do. If only I could get my eyelid swelling under control it would improve a lot of problems, including function of my meibomian glands. If you read some of Dr Latkany's post he says that the inflammation (eyelid principally) is causing the MGD in patients with ocular rosacea, not the other way around. So that's the thing I'm most keen to solve.

Do you use cold compresses afterwards NotADryEye? And do you massage your eyelids at all?

Hi littlemermaid - thanks for all your thoughts. No I haven't been tested for demodex mite. I don't believe there is any conclusive evidence in the scientific literature that it causes rosacea, even if there is might be an association between rosacea and higher numbers of the mite. And I might be wrong about this but I think this association has only been made in those with the pustular, papule type of rosacea anyway, which I don't have (but I have had mild rosacea for over 10 years now). And as far as I understand ocular rosacea (by itself) isn't an autoimmune disorder, it's a vascular problem.

Thanks for your suggestion to try NHS Moorfields, but that's where I'm being seen! Had a much better appointment today though with a Finnish lady doctor (an associate specialist), which makes me feel slightly better. She was friendly, more sympathetic and willing to try new things with me i.e. prescribe me the things I've been wanting to try. I don't think she's particularly more knowledgeable than the consultant I usually see, but she was just so much more open minded and willing to listen. And didn't mind spending a lot of time with me going through all the options. Which is what I would expect if I went to see someone private, so that's why I thought it was a good idea to pay to see someone. If anyone is interested to know who she is, then just send me a message. And I'm still interested in finding a private ocular rosacea/posterior blepharitis specialist, so if anyone knows of anyone, please do let me know.

I have no pets but I am significantly allergic to house dust mites so am going to try patanol and see if it makes any difference. Unlikely but worth a go.
I don't travel that much anymore but don't recall that travelling makes my eyes/eyelids worse - what were you thinking there littlemermaid? Having said that I do recall that when I stay in strange places my eyelids swell a bit more, but I always put that down to possible allergies, so am now usually very insistent on hypoallergenic bedding. And not surprisingly I do notice they are worse in air-conditioned environments.

Might go and see Michel Guillon again - does anyone know if he knows much about eyelid disease i.e. ocular rosacea? And whether he can prescribe drugs? I.e antibiotics? I think he's an optometerist so probably can't prescribe much.

And thanks peppermint for your tip re garlic.

Katewest - didn't know restasis can work second time round? Why is that do you know? That's another thing worth trying if that really is the case. In my case I don't think diet seems to have anything to do with how my eyes are.

[Katewest]

There was a study posted on here about how Restasis is sometimes effective after you tried it once, gave it up, then tried again. I think its because people are either compiling with treatment longer or are healed more the 2nd time around and the Restasis is more effective. Just my 2 cents.
How long have you tried your diet and what are you doing?

[NotADryEye]

Thanks NotADryeEye. Trouble is warmth is not a good idea for anyone with rosacea as heating flushes the skin, and this increases vascularisation, which further exacerbates the problem. Same principles applies with ocular rosacea.

I have rosacea. The amount of heat I apply does not bother me or exacerbate the rosacea. I use metogel 1% 2x per day on my face. I only apply the heat to my eye lids and, I believe just about any doctor would say that I have ocular rosacea. But really, that is almost a meaningless term, like Dry Eye, or even cancer. What do these terms really mean when it comes to specific diagnosis at treatment?

And personally I've found heat to cause more eyelid swelling, which is the very last thing I want to do. If only I could get my eyelid swelling under control it would improve a lot of problems, including function of my meibomian glands. If you read some of Dr Latkany's post he says that the inflammation (eyelid principally) is causing the MGD in patients with ocular rosacea, not the other way around. So that's the thing I'm most keen to solve.

To me, this sounds completely illogical. You start with normal lids. Then something causes your eye lids to swell. Call it whatever you like (rosacea is just a term for something that is not well understood, ocular rosacea is just another term, as littlemermaid explains). MGD is a possibility. A symptom of MGD is swelling in the eye lids. Then you think about what is causing MGD and how do you relieve the swelling. If your mg's aren't functioning (MGD) you may have blocked glands, which can cause the swelling. This means you have meibum that is blocked inside the gland. So you need to encourage the meibum to flow. It needs a path of egress. Or you may have allergies. And you may have both.

Then there is the question of demodex mites. See below.

Do you use cold compresses afterwards NotADryEye? And do you massage your eyelids at all?

No, to both questions. Cold compresses after warm would defeat the purpose which is to liquefy the meibum and encourage meibum production. Regarding massage, I think it carries a lot of risk. After massaging just a few times my mg's closed up almost completely. No meibum flowing, no lubrication. I was advised to massage the lids back when I had only one spot that was a constant irritation and could open my eyes because it is the typical advice given by doctors who didn't know better. After just two weeks I could no longer open my eyes. Things went downhill quickly after that.

Hi littlemermaid - thanks for all your thoughts. No I haven't been tested for demodex mite. I don't believe there is any conclusive evidence in the scientific literature that it causes rosacea, even if there is might be an association between rosacea and higher numbers of the mite. And I might be wrong about this but I think this association has only been made in those with the pustular, papule type of rosacea anyway, which I don't have (but I have had mild rosacea for over 10 years now). And as far as I understand ocular rosacea (by itself) isn't an autoimmune disorder, it's a vascular problem..

Whatever the cause of the rosacea, demodex mites also live on the lashes and meibomian glands. If your immune system is compromised, it is believed, but not necessarily proven, that the mites can overpopulate. So you may have too many mites. Does it matter the cause? What matters is that you have too many mites and so you might want to get tested. The mites die and their carcasses break down and become irritants. They harbor bacteria that release when the mites die. The bacteria are irritants. They mix with the tear film and turn into soap. Soap, saponification, turns your eyes red and is very irritating. So, too many of these irritants, or delayed tear clearance due to aqueous deficiency and you end up with the diagnosis ocular rosacea. Plus you may have allergies to the mites themselves and/or the bacteria. Also, remember that just because something hasn't been studied, does not mean that it isn't happening. There is plenty of activity happening in the human body that hasn't been studied but is, nevertheless, taking place. In my personal experience with rosacea/ocular rosacea, treating for demodex mites has been very important and continues to be so.

[littlemermaid]

And as far as I understand ocular rosacea (by itself) isn't an autoimmune disorder, it's a vascular problem.

Research on inflammation pathways has moved on to seeing 'rosacea' as an immune over-reaction. There sure is a pathway through veins though. PubMed search 'rosacea' and 'ocular rosacea' is useful on current thinking because there are frequent updates, and search for the latest summaries on Medscape.

As NADE says, I'm sure 'rosacea' diagnosis means as little as 'it's a rash' diagnosis. Maybe some docs are using 'ocular rosacea' to mean 'sensitive eyes' of unknown origin. I use it to mean 'eye inflammation with periorificial immunology cause'. Maybe some of us really have unresolved blepharitis, and keratitis, and conjunctivitis, from other causes like meds, allergy, bugs, hormones, nutrition.

We are finding hypersensitivity triggers - see the experience NADE very kindly shares on immune conditions and various effects in different parts of the body. We got Moorfields diagnosis of 'sensitivity to staphylococcus aureus' and although that's along the right lines, it's sensitivity to whole lot more. They said they do not examine or treat demodex, even with rash (PubMed 'demodex eye').

We have gastro sensitivities too, gut cramps. Diet clearly affects eyes and skin same day for us. Maybe food intolerance, or maybe affecting immune system, hormones, lipids, through gut microbiota (PubMed). This is why my d's experience is useful for people without skin signs (PubMed 'child rosacea') - she is zero wheat, sugar, dairy, very little red meat or pork - otherwise it all flares up, skin and red eye with MGD. Oats seem to be very helpful. Also oily fish 3/wk eg salmon pan-fried in light olive oil, and oil salad dressings, are pretty darn good. These are common triggers we've found apply to us - everyone's experience will be different. I think it would be strange not to try a diet solution in case it works. Gluten and sugar free is easy. Just needs planning. As SAAG says, one piece of birthday cake or chocolate ain't gonna hurt either (although for my d. it does). We were inspired by member eye_allergy-kids from Sri Lanka on good clean diet, and he has been right.

'Rosacea' and autoimmune dysfunctions like Sjogrens and Stevens-Johnson can be triggered by topical or oral meds like steroids and antibiotics (PubMed, Medscape). Rosacea and dermatitis can be triggered even by topical chemicals in everyday products, detergents and perfumes, like sodium lauryl sulphate or isopropyl myristate. (In milder form, some people report their eyes are better even on changing tap water region.) We've had plenty bathroom products making the eyes and skin worse. Interestingly, some sensitivity disorders like Crohns and IBS can show anywhere along the gastro tract from mouth through. I don't mean IBS is directly relevant to eyes (although it can be) - just that other disorders may show in eyes only.

We use antimicrobial facewashes to keep bugs down and careful eye cleaning - LyndaT has kindly posted very good experience with this, and she had no skin rash but itching. Also daily warm compress or Blephasteam (moisture chamber rather than contact heat) to keep the eye glands moving. Cool compress and refrigerated drops if there's inflammation. We have done well treating for demodex with tea tree shampoo eyelid margin scrubs (1:50) in 1m courses, plus TTO moisturising facewash, as NADE describes. It is normal to have demodex but it is overgrowth and inflammation reaction that's the problem. Don't need rosacea p&p for that. It does not cause rosacea, but it moves in on immune-compromised skin and blocked glands (PubMed). As do other bugs.

Most success worldwide in treating rosacea sensitive skin has been by reducing irritants (chemicals and bugs), antibiotics, and 'supporting the dermal matrix' (James Del Rosso, Richard Gallo, Kavanagh) - ceramide (wax) base moisturisers have been best, without allergens. It's thought there is a lack in the skin's defences and they are working to identify what (PubMed 'rosacea'). (Some people report big improvement by finding a helpful eyecream or oil.)

Scientists are working on finding inflammatory markers in blood, skin and tear film (PubMed 'rosacea'). Same for Sjogrens. It's complicated though, with the different immune responses.

It's been so useful to ask strangers what they think, to get some common sense! A sales lady told me she cleared her son's rosacea rash by discovering his food intolerances - things he had too much of as a child, orange juice, strawberries. Another sales lady told me to try Head & Shoulders shampoo in case there's fungus (Malassezia, like dandruff), especially if eyelashes are falling out. Best suggestions yet. Loving LyndaT's fix with antibacterial facewashes - worth trying (Freederm may be less harsh than Wet Wipes if we can't find the Avon product). I've posted our doc's demodex regime before, if interested. Someone may recognise it as contact allergy or eczema.

Although Dr L's book doesn't recommend the whole eyelid squeezing thing, he does recommend an eye rub in a warm shower. Does even that make your eyes more swollen?

There are 3 formulations of cyclosporine sold in Moorfields Pharmaceuticals, so a different base might suit you.

How do you clean your eyes? Which eyelid margin scrubs suit you the best? There are people who can't even use water without swelling. Oil/wax base might be better. Have you been able to see your eyelid margins in a slit-lamp microscope camera? High street Optometrist can do this. That is so useful, to check the cleaning regime.

RandU, hope you can find us all interested open-minded specialists with current knowledge to work with. NHS Trust private services are looking attractive now because of NHS backup, shared notes, team, labs, equipment, if you want that. Normally in Private practice there is zero backup, and it's 'caveat emptor', so keep the NHS Eye Hospital too.

I just paid for one-off consultation Private when we got misdiagnosis, no time, or decision-maker not available NHS. I also pay sometimes for safety because there is no NHS coordinated service for children, condition isn't recognised in children by NHS GPs so can't get specialist referrals, 15% discount for unfunded eyedrops on private prescription, and we'd be alone managing different aspects of this off the internet otherwise. We would have to pay Optometrists for local co-care monitoring for children anyway, not NHS funded. Our local NHS-contracted Ophthalmology triage and emergency service doesn't see under-16s. Our GP practice doesn't own an ophthalmoscope. So lucky I do. We have a great children's Ophthalmologist to help us at the moment.

RandU, do you have any support, medical or other, while you work on this? Can you get referral in NHS?

Sometimes there is another Consultant in an NHS clinic, though, with very different experience and knowledge and skill. If your current Consultant is not interested or doesn't know what it is, why doesn't he give you a chance with transfer to someone else?

Have your eyes been swollen a long time? Have you had any times of improvement?

my current opthamologist (who is supposedly a top external eye disease doctor) wrote in a letter to my GP that he didn't think my eyelid edema (swelling) had anything to do with my "possible ocular rosacea"

Interesting. Maybe ask him what he was thinking. I know no one has fixed this for you yet, but we've had best results from keeping a very open mind but taking responsibility for reading up, as you are doing. Hope there's something useful for you in the above rant.

[redandunhappy]

I have rosacea. The amount of heat I apply does not bother me or exacerbate the rosacea. I use metogel 1% 2x per day on my face. I only apply the heat to my eye lids and, I believe just about any doctor would say that I have ocular rosacea. But really, that is almost a meaningless term, like Dry Eye, or even cancer. What do these terms really mean when it comes to specific diagnosis at treatment?

Ocular rosacea is not completely meaningless. I believe it means increased vascularisation of the eyelids in the same way that happens with the face.
So when it comes to treatment, for some with ocular rosacea, it does make sense for it to be morer nuanced than someone with blepharitis and no ocular rosacea. You only have to read the many many posts about it on this board - people who say that heat exacerbates their eyelid problems, and it seems to be known by some of the better American eye doctors that heat is no good for those with ocular rosacea. See below for explanation.

To me, this sounds completely illogical. You start with normal lids. Then something causes your eye lids to swell. Call it whatever you like (rosacea is just a term for something that is not well understood, ocular rosacea is just another term, as littlemermaid explains). MGD is a possibility. A symptom of MGD is swelling in the eye lids. Then you think about what is causing MGD and how do you relieve the swelling. If your mg's aren't functioning (MGD) you may have blocked glands, which can cause the swelling.

We don't know everything about rosacea, but we do know that it is a problem with the blood vessels in the face. People with rosacea have blood vessels that don't work properly, and every time they are dilated, signals get sent back to the brain to make more blood vessels. That's why people with rosacea tend to have many many more veins/vessels in their face than those without. And why it make sense to avoid flushing - not only because it's an unpleasant symptom but because it further progresses the disease.

As I said above, I understand that people with ocular rosacea have increased vascularisation of their eyelids and sometimes their eyes as well, which can lead to inflammation. I wish you were right about eyelid swelling being a symptom of MGD (as it would be so much simpler to treat), but unfortunately I think you are wrong. As I mentioned previously, Dr Latkany (who is one of the world's experts it seems) thinks it is the other way around, i.e. that in those with ocular rosacea it is the eyelid swelling/inflammation that is causing the MGD. See this post:

http://www.dryeyezone.com/talk/showt...ion&highlight=

Or perhaps it's not that simple and it's a Catch 22 situation. Swelling causes MGD, which causes further swelling. But in my personal experience, I had normal lids, then I had eyelid swelling/inflammation, then the MGD started. When my eyelid swelling has been under control, so has my MGD.

Therefore the last thing I want to do is cause even more inflammation and eyelid swelling, which is what happens when I use too much heat. This makes perfect sense as heating flushes the skin, causing inflammation and further exacerbating the problem. The same prinicples mentioned above.

No, to both questions. Cold compresses after warm would defeat the purpose which is to liquefy the meibum and encourage meibum production.

True the purpose of heat is to get oil from the meibomium glands flowing, but my understanding is that it doesn't encourage more production and in fact can be harmful if done too much. See this article:
http://dryeyezone.com/encyclopedia/mgcare.html

So my thinking was to use a little bit of heat to get the oil flowing into the eyes and unblock the glands, which happens within minutes. Is there any reason to keep the glands heated for more than a couple of minutes? Then a bit of a cold compress to reduce any possible inflammation caused and contract the vessels - as we do when we have an injury or any kind of swelling elsewhere on the body.

Whatever the cause of the rosacea, demodex mites also live on the lashes and meibomian glands. If your immune system is compromised, it is believed, but not necessarily proven, that the mites can overpopulate. So you may have too many mites. Does it matter the cause? What matters is that you have too many mites and so you might want to get tested. The mites die and their carcasses break down and become irritants. They harbor bacteria that release when the mites die. The bacteria are irritants. They mix with the tear film and turn into soap. Soap, saponification, turns your eyes red and is very irritating. So, too many of these irritants, or delayed tear clearance due to aqueous deficiency and you end up with the diagnosis ocular rosacea. Plus you may have allergies to the mites themselves and/or the bacteria. Also, remember that just because something hasn't been studied, does not mean that it isn't happening. There is plenty of activity happening in the human body that hasn't been studied but is, nevertheless, taking place. In my personal experience with rosacea/ocular rosacea, treating for demodex mites has been very important and continues to be so.

It's true that science is always progressing, and with new discoveries thinking on things can change. However I believe it has been studied, and that the current consensus is that although there might be an association with higher number of mites (which as you say live on everyone anyway) for some forms of rosacea (the form that I don't have), no causation has been proved. I'm not totally dismissing anecdotal evidence, but personally I give more weight to evidence based theories. What good quality studies have looked at this?

But I would be interested to hear about your experiences with demodex mites - have you been tested for them? Do you have more than normal levels? Do you have the pustular type of rosacea? And how are you treating the mites?

[NotADryEye]

Ocular rosacea is not completely meaningless. I believe it means increased vascularisation of the eyelids people who say that heat exacerbates their eyelid problems, and it seems to be known by some of the better American eye doctors that heat is no good for those with ocular rosacea.

Rosacea on its own means redness. Ocular rosacea then explains further where the redness is, in the eyes, subtype 4. Vascularization is more specific and is one of the rosacea subtypes (1). There can be redness without visible vascularization. So in this sense, rosacea is less meaningful ("meaningless") then applying a term like vascularization and is how I had intended to differentiate between a term that is a diagnosis for a condition that can then be treated and a term used generally for a class of disease but for which treatment would require more specificity. For example, if there is a diagnosis of cancer how would it be treated? The term "cancer" on its own would not then lead to a clear direction for treatment. We would need to know much more detail about this diagnosis of cancer which is, the way I see it, really just a term, not a diagnosis. But fundamentally, I don't think we disagree.

Regarding heat applied to eye lids, in my experience, the key is to apply the least amount of heat for the shortest amount of time for the purpose of not exacerbating any other condition while achieving the most benefit. When I apply too much heat or apply it for too long, I do have discomfort. But in order to keep the meibum liquefied, I believe that for me it is important to apply a small amount of heat for a short amount of time. For me, just two minutes, barely warm, is enough.

We don't know everything about rosacea, but we do know that it is a problem with the blood vessels in the face. People with rosacea have blood vessels that don't work properly, and every time they are dilated, signals get sent back to the brain to make more blood vessels. That's why people with rosacea tend to have many, many more veins/vessels in their face than those without. And why it make sense to avoid flushing - not only because it's an unpleasant symptom but because it further progresses the disease.

I believe you are describing rosacea Subtype 1.
This is from www.rosacea.org

Subtypes of Rosacea

The consensus committee and review panel of 17 medical experts worldwide identified four subtypes of rosacea, defined as common patterns or groupings of signs and symptoms. These include:
• Subtype 1 (erythematotelangiectatic rosacea), characterized by flushing and persistent redness, and may also include visible blood vessels.
• Subtype 2 (papulopustular rosacea), characterized by persistent redness with transient bumps and pimples.
• Subtype 3 (phymatous rosacea), characterized by skin thickening, often resulting in an enlargement of the nose from excess tissue.
• Subtype 4 (ocular rosacea), characterized by ocular manifestations such as dry eye, tearing and burning, swollen eyelids, recurrent styes and potential vision loss from corneal damage.

Many patients experience characteristics of more than one subtype at the same time, and those often may develop in succession. While rosacea may or may not evolve from one subtype to another, each individual sign or symptom may progress from mild to moderate to severe. Early diagnosis and treatment are therefore recommended.

As I said above, I understand that people with ocular rosacea have increased vascularisation of their eyelids and sometimes their eyes as well, which can lead to inflammation. I wish you were right about eyelid swelling being a symptom of MGD (as it would be so much simpler to treat), but unfortunately I think you are wrong. As I mentioned previously, Dr Latkany (who is one of the world's experts it seems) thinks it is the other way around, i.e. that in those with ocular rosacea it is the eyelid swelling/inflammation that is causing the MGD. See this post:

http://www.dryeyezone.com/talk/showt...ion&highlight=

Or perhaps it's not that simple and it's a Catch 22 situation. Swelling causes MGD, which causes further swelling. But in my personal experience, I had normal lids, then I had eyelid swelling/inflammation, then the MGD started. When my eyelid swelling has been under control, so has my MGD.

Therefore the last thing I want to do is cause even more inflammation and eyelid swelling, which is what happens when I use too much heat. This makes perfect sense as heating flushes the skin, causing inflammation and further exacerbating the problem. The same prinicples mentioned above.

True the purpose of heat is to get oil from the meibomium glands flowing, but my understanding is that it doesn't encourage more production and in fact can be harmful if done too much. See this article:
http://dryeyezone.com/encyclopedia/mgcare.html

So my thinking was to use a little bit of heat to get the oil flowing into the eyes and unblock the glands, which happens within minutes. Is there any reason to keep the glands heated for more than a couple of minutes? Then a bit of a cold compress to reduce any possible inflammation caused and contract the vessels - as we do when we have an injury or any kind of swelling elsewhere on the body.

It's true that science is always progressing, and with new discoveries thinking on things can change. However I believe it has been studied, and that the current consensus is that although there might be an association with higher number of mites (which as you say live on everyone anyway) for some forms of rosacea (the form that I don't have), no causation has been proved. I'm not totally dismissing anecdotal evidence, but personally I give more weight to evidence based theories. What good quality studies have looked at this?

I think it might have to do with the rosacea subtype you have. But which one came first and which one came second, well, I don't think that MGD would logically cause subtype 1. Whereas if you have vascular swelling which can put stress on the mg's then MGD could be a result. The key is still to treat and restore function regardless of the cause, it is still the diagnosis and treatment(s) that is important, particularly once you are in the cycle of MGD causing other problems.

My opinion re: heat is that even a small amount, just warm and for just a few minutes, can help tremendously. It also helps with burning which can be very difficult to tolerate. Lubricated tissue is best, IMO.

Regarding the question of evidence-based versus not: if something is evidence-based, IMO, this just means that this particular thing was studied. Something that was not studied may still be true. There is an infinite and endless array of unstudied truths out there.

But I would be interested to hear about your experiences with demodex mites - have you been tested for them? Do you have more than normal levels? Do you have the pustular type of rosacea? And how are you treating the mites?

Yes, I have had my lashes pulled and have been diagnosed with an overpopulation of demodex. I have seen them under microscopes. They are hideous little creatures.
I have rosacea subtypes 1, 2 and 4 (ocular).
Treatment for demodex started with 20% solution of Tea Tree Oil. I developed toxicity and stopped treatment for about a year while undergoing surgery and recovery for conjunctival chalasis, among other things. I restarted demodex treatment for about 3 months with a balm of tea tree oil. It was particularly difficult for the first two weeks during the initial die off. After three months I switched to Cliradex. Eventually I developed a sensitivity to this as well. I have also taken Ivermectin, just 9mg 2x, one week apart.

After each course of treatment I had visible reduction of vascularization and redness in the lid margins and inner lids. Comfort improved significantly, particularly after Cliradex and Ivermectin. I also noticed a clearer complexion.

My next appointment is in January. We'll see how I am doing then.

[redandunhappy]

Rosacea on its own means redness. Ocular rosacea then explains further where the redness is, in the eyes, subtype 4. Vascularization is more specific and is one of the rosacea subtypes (1). There can be redness without visible vascularization.

Rosacea does not mean redness. It is characterised by redness, but the definition is a chronic inflammatory disease in which blood vessels of the face enlarge causing the skin of the face to become abnormally flushed and sometimes pustular. I'm quoting now from Geoffrey Nase: "Rosacea is primarily a disorder of the facial blood vessels. Experts from across the world agree that vascular abnormalities are central to all stages and symptoms of rosacea."

Vascularisation is the process whereby body tissue becomes vascular and develops capillaries. My understanding is increased vascularisation is a feature of all rosacea subtypes, not just subtype 1. So I don't think it makes sense to say there can be redness without visible vascularisation. Redness can be caused by pastules and papules (i.e. mini sites of infection), but the root cause of this inflammation is damaged blood vessels. And what do you think is causing the persistent redness (not relating to the surface of the skin) in subtype 2 or 3? It's permanently dilated and flushed blood vessels, of which we know there are many more of in a rosacea sufferer i.e. increased and visible vascularisation.

So in this sense, rosacea is less meaningful ("meaningless") then applying a term like vascularization and is how I had intended to differentiate between a term that is a diagnosis for a condition that can then be treated and a term used generally for a class of disease but for which treatment would require more specificity. For example, if there is a diagnosis of cancer how would it be treated? The term "cancer" on its own would not then lead to a clear direction for treatment. We would need to know much more detail about this diagnosis of cancer which is, the way I see it, really just a term, not a diagnosis. But fundamentally, I don't think we disagree.

Rosacea is not a class of disease like cancer, it is a specific disease to do with blood vessels in the face not working properly and reacting inappropriately to certain triggers. Clear direction for treatment is to reduce inflammation and acne infection (with antibiotics e.g. Metrogel or doxycycline), or to remove the damaged blood vessels altogther with laser.

Regarding heat applied to eye lids, in my experience, the key is to apply the least amount of heat for the shortest amount of time for the purpose of not exacerbating any other condition while achieving the most benefit. When I apply too much heat or apply it for too long, I do have discomfort. But in order to keep the meibum liquefied, I believe that for me it is important to apply a small amount of heat for a short amount of time. For me, just two minutes, barely warm, is enough.

It's good that you've managed to strike a balance between getting your oil flowing and not causing any inflammation.

We don't know everything about rosacea, but we do know that it is a problem with the blood vessels in the face. People with rosacea have blood vessels that don't work properly, and every time they are dilated, signals get sent back to the brain to make more blood vessels. That's why people with rosacea tend to have many, many more veins/vessels in their face than those without. And why it make sense to avoid flushing - not only because it's an unpleasant symptom but because it further progresses the disease.

I believe you are describing rosacea Subtype 1.
This is from www.rosacea.org

Subtypes of Rosacea

[I]The consensus committee and review panel of 17 medical experts worldwide identified four subtypes of rosacea, defined as common patterns or groupings of signs and symptoms. These include:
• Subtype 1 (erythematotelangiectatic rosacea), characterized by flushing and persistent redness, and may also include visible blood vessels.
• Subtype 2 (papulopustular rosacea), characterized by persistent redness with transient bumps and pimples.
• Subtype 3 (phymatous rosacea), characterized by skin thickening, often resulting in an enlargement of the nose from excess tissue.
• Subtype 4 (ocular rosacea), characterized by ocular manifestations such as dry eye, tearing and burning, swollen eyelids, recurrent styes and potential vision loss from corneal damage.

Many patients experience characteristics of more than one subtype at the same time, and those often may develop in succession. While rosacea may or may not evolve from one subtype to another, each individual sign or symptom may progress from mild to moderate to severe.

I am not just describing subtype 1. Again my understanding is increased vascularisation is a feature of all rosacea subtypes, not just subtype 1.

The key is still to treat and restore function regardless of the cause, it is still the diagnosis and treatment(s) that is important, particularly once you are in the cycle of MGD causing other problems.

In my mind, the best way to restore function is to treat cause if at all possible. If you can't treat root cause i.e. dodgy blood vesels and increased vascularisation, then in my opinion the next best thing is to treat the resulting inflammation, which is why a lot of people with ocular rosacea just use cold compresses. For some that is enough to restore function, for others (like myself) I believe I cannot get the inflammation under control enough by cooling the eye area, so I unfortunately still have the problem of blocked glands and poor consistency of oil. In which case it makes sense to directly try and restore function. But unfortunately the way to do that is to use heat, and as we keep saying, heat, although good for the meibomium glands, exacerbates inflammation.

My opinion re: heat is that even a small amount, just warm and for just a few minutes, can help tremendously. It also helps with burning which can be very difficult to tolerate. Lubricated tissue is best, IMO.

I'm experimenting with this, but for me even a little bit of heat seems to be worse than none at all. What do you mean by lubricated tissue?

Yes, I have had my lashes pulled and have been diagnosed with an overpopulation of demodex. I have seen them under microscopes. They are hideous little creatures.
I have rosacea subtypes 1, 2 and 4 (ocular).
Treatment for demodex started with 20% solution of Tea Tree Oil. I developed toxicity and stopped treatment for about a year while undergoing surgery and recovery for conjunctival chalasis, among other things. I restarted demodex treatment for about 3 months with a balm of tea tree oil. It was particularly difficult for the first two weeks during the initial die off. After three months I switched to Cliradex. Eventually I developed a sensitivity to this as well. I have also taken Ivermectin, just 9mg 2x, one week apart.

After each course of treatment I had visible reduction of vascularization and redness in the lid margins and inner lids. Comfort improved significantly, particularly after Cliradex and Ivermectin. I also noticed a clearer complexion.

Sounds like you've been through a lot. Really sorry to hear you've had such a hard time of things. When you say you had a visible reduction vascularisation, do you mean a reduction of visibly dilated capillaries? Or reduced inflammation? Once increased vascularisation has occurred I thought the only way (at the moment) to reduce the number of blood vessels/capillaries was by laser.

[Peppermint]

NotADryEye-
I too have rosacea but I've never been tested for demodex. I am very interested in your progress treating the demodex & am glad to hear that you have found relief after each treatment. I use the sterilid foam which has some tea tree in it, but of course the concentration of tea tree in it is not enough. On my face, I use a tea tree wash from Desert Essence. What eye dr is treating you for the demodex? I know that Dr Tseng in Miami does this and have contemplated going to see him.

[NotADryEye]

Redandunhappy,
The term rosacea is derived from Latin, means rose-colored i.e. red. That's all it really means. Now comes the question, what is the etiology of the redness? There can be many factors. You refer to a few, which are well accepted, if not well understood. But there is also some evidence that when there are demodex mites, or an over-population of demodex, rosacea may occur. There may be an allergy associated with demodex as well, causing redness and inflammation.

Take note of the assertion you quote, "We don't know everything about rosacea..." That should tell you something. But, if you have your mind made up, then as long as your diagnosis is correct and your treatment is effective, that is what matters. Are you having good results with your treatment? Do you feel relief? Ultimately, isn't that what matters?

Still, you have to bear in mind that a treatment may be effective, but another condition that feels the same way as the one that was treated, still exists and needs to be addressed. This is one of the challenges with DES, IMO.

By lubricated tissue I mean tissue e.g. lid margins, conjunctiva, that is exposed to meibum naturally, not through expression and not with OTC drops.

Has your doctor considered probing if your glands are blocked?

After treatment for demodex there is less inflamation, redness, burning, discomfort and fewer visible blood vessels.


Peppermint,
I use Dessert Essence face wash with TTO too and use DE lotion with TTO as well. I like both these products. I also use metrogel 1%, not on my eyes.

I've been seeing Dr. Steven ****** since September 2011 and have improved tremendously under his care. I still have a ways to go but compared to where I was a little over two years ago, it is night and day. Back then I couldn't even open my eyes for a moment. Now I can post to this forum. My gratitude has no words.