Private opthalmologist in England specialising in ocular rosacea

[redandunhappy]

Hi all,

I am so fed up with my eyes (I have ocular rosacea, MGD, evaporative dry eye and constant eyelid puffiness/swelling) - the way they feel uncomfortable and sore all the time, the veins that I have in them that never used to be there, my red eyelid margins and red veiny eyelids and most of all my lower eyelid swelling and bags that makes me look years older than I am.

It's totally ruined my self-confidence and I haven't found one doctor here (even at Moorfields) that I think really understands ocular rosacea and what is going on. Even 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", which is just a complete joke! Funny how I've had constantly swollen eyelids since my ocular rosacea started.....inflammation from the latter is so obviously causing the former. He's also quite dismissive and unsympathetic sometimes, so I've had enough of him.

I've decided I would happily spend some money on paying to see an opthamologist who knows what they are talking about (a Dr Latkany equivalent) but is there anyone good here?

I'm more bothered about my eyelid swelling and symptoms than anything else, so I guess it would need to be an external eye disease opthamologist who specialises in blepharitis or ocular rosacea, rather than someone who is more interested in eye surface issues.

Does anyone have any ideas?

I would be grateful for any suggestions (London based is ideal but I could travel out of London if necessary)

P.s. I've been to see Michel Guillon already

[lizlou29]

Sounds very similar to me. My facial rosacea isn't obvious so all the doctors i've seen have pretty much dismissed ocular rosacea as the cause of the dryness.

My current ophth doesn't specialise in bleph or ocular rosacea (does anyone in the UK?) but he is willing to let me try pretty much any treatment I want.

I was going to say Michel Guillon but you've already seen him.

I would like to see Dr. Latkany but It's not really feasible as I wouldn't be able to go back for check-ups etc.

Sorry I can't help but just wanted to say I share your frustration. I'm pretty sure ocular rosacea doesn't respond well to the same treatments used for a 'standard' case of bleph but I've not met a doctor yet that hasn't wanted to dish out the same standard treatment regardless of the cause.

[Katewest]

What treatments are you doing? It may be that one of them is making you worse? Ex: warm compresses

[redandunhappy]

Thanks you both for your replies.

I'm not doing warm compresses as they do indeed make my eyes worse (although warmth does seem to help initially with the flow of oil into eyes, it ultimately causes more inflammation I think). Haven't found much that helps actually, apart from oral antibiotics (for their anti-inflammatory properties) but the effects of them seem to wear off after a few months.

In fact after a few years, I still haven't really figured out what helps and what makes things worse, as is so multi-factorial. That's the trouble with this blasted condition.

Thank you for trying to help though

[Faith1989]

Have you tried mild steroids, restasis or allergy drops?

[redandunhappy]

I've had mild steroids before and they helped with my eyes at the time, but I thought you couldn't be on them for very long

Have tried restasis and it didn't work.

Haven't tried allergy drops, but have tried oral antihistamine which didn't seem to make a difference. Do you think worth trying allergy drops as well?

Would love to try AzaSite but it's not available here. Have tried the slightly stronger Azyter (European version 1.5% active ingredient) but can't tolerate it

[Katewest]

I tried Azasite and it burned and made my eyes worse. How long did you try restasis for? I read an article on this site that said some people have success on their second trial with it.
what about diet?

[Faith1989]

My doctor says very mild steroids such as alrex are okay a few times per week. That's just my doctors pinion though.. Restasis doesn't do much for me either. I would try pataday, it's an ocular antihistamine. It helps me , but is a tad drying.. It takes away redness for me though, which is nice.

[NotADryEye]

I'm not doing warm compresses as they do indeed make my eyes worse (although warmth does seem to help initially with the flow of oil into eyes)

... is so multi-factorial. That's the trouble with this blasted condition.

Thank you for trying to help though

When you were doing warm compresses, for how many minutes did you do them each time and how many times per day?

And yes, multi-factorial!!! If you don't address all the issues, it seems like you may not be getting better because you might not feel better even though clinically you are probably doing better.

[NotADryEye]

I would try pataday, it's an ocular antihistamine. It helps me , but is a tad drying.. It takes away redness for me though, which is nice.

If you have an allergy, Pataday can help. You could also try local bee pollen, if it is a plant allergy. It is important that the bee pollen is local. You start with 1/2 tsp in the morning and about a week later, if you don't have any adverse reactions, increase to 1 tsp and keep that up for a few months. Eventually your body does not recognize the pollen as an allergen.

If the first time you eat the bee pollen (just hold it in your mouth for a while and chew on it till it dissolves) your suddenly have a mouth full of saliva, you know you have an allergy. Bee pollen is also full of all sorts of beneficial nutrients.

[redandunhappy]

Thanks for further suggestions.

I will ask about using Pataday next time I see my opthalmologist but I've got ocular rosacea, so I think the chances of this being allergy related are small.

Will also ask again about steroid drops and perhaps trying restasis again (I tried it for about 3 months I think first time)

I've tried warm compresses for all sorts of different length of times, but never really tried for less than 5 minutes, so perhaps will try for 2 mins. But if you read this,
http://dryeyezone.com/encyclopedia/mgcare.html

the doctor suggests you need at least 4 minutes and that you shouldn't do it too often anyway, as can damage the meibomian glands

Anyone have a recommendation for a good othalmologist here?

[littlemermaid]

RaU, Have you been examined and treated for demodex? Have you ever noticed any other skin or allergy changes? Is it only your eyes that are red and sensitive or have you got rosacea signs? Do you have pets?

Of course, Private is not necessarily better knowledge, and people go into private practice for different reasons - it's all about finding someone you want to work with. I don't mind tetchy doctors with hard-earned experience, for example, but it depends where the treatment is going. I've never heard of a dry eye expert in UK, partly I guess because of the breadth of work they do here in the specialism, but maybe someone will PM you.

Do you have the same eye symptoms when you travel?

I think I would try Moorfields NHS or go through the Private list, unless you have an immunology condition. Please answer on the demodex though.

Difficult to convey observations to GPs, and I would give Ophth lots of leeway on describing what you've got. I use 'ocular rosacea' just to convey there's something autoinflammatory going on too to docs who don't know much about eyes and derm and autoimmune conditions. After seeing wonderful Paed Rheum for ideas, we're doing great with diet - no wheat, sugar, dairy - oily fish 3xwk - and don't have flareups if we stick to that.

[Katewest]

Wow! I think everyone that expresses their lids, or has MGD for that matter, should read the article redandunhappy cited. I am going to cut WAY back on doing expressions because when I step back and think about it….I have only gotten worse since doing it. And I know I do it too much but it does provide very acute relief. That only last a few minutes though. I think maybe this has been causing some of my lid and eye inflammation?

[Peppermint]

Red-
I have ocular rosacea also. I have noticed that my face sometimes gets puffier than normal and I know that this affects the skin on my eyelids also. I read on the rosacea forum about several users using raw garlic to reduce inflammation and they have had some success, including one woman who has both facial and ocular rosacea and she says eating raw garlic has helped both. I've been eating a clove of raw garlic for the last 2 days and I have noticed an overall improvement in swelling. There is a natural component in garlic that is anti inflammatory. This apparently only works with raw garlic, not cooked. I cut cloves up into small pieces and swallow them like pills.

[NotADryEye]

I've tried warm compresses for all sorts of different length of times, but never really tried for less than 5 minutes, so perhaps will try for 2 mins.

Warm compresses can work with as little as 2 minutes. That's all I do. 2x per day.