Papilliary conjunctivitis?

[bp77]

my oil are not coming out. the gland are clogged.How come before lasik they did not tell u about ocullar rosaca? do u have it on ur face?

[Margaret]

I probably wasn't showing any signs of it until after the surgery. You wouldn't be able to tell on my face. I flush, but that's about it. Most docs don't think I have rosacea and the dermatologist I saw said I didn't have it, but I know I have MGD so I might as well try doxy.

[y-gwair]

Well, just went to a local eye doc here and he said I have occular rosacea and MGD.

Did he mention whether you had any signs of papilliary conjunctivitis, whether this can be a symptom of rosaea? Apparently I don't have MGD (ophth. said that virtually everyone has some mild signs of blepharitis, so the small amount I had wasn't significant). If I press my lids gently, clear watery fluid expresses readily from all the little glands on margins, which really doesn't sound like MGD. I do have problems with facial flushing/burning/flaking facial skin irritation at times.

[Margaret]

Rosacea

Ok, so my understanding is that there is no definitive test for ocular rosacea (or rosacea for that matter), but markers that you have to have in order for the docs to feel confident that you have it. One of the markers of ocular rosacea is a papillary response under the eyelids. I definitely have that, although thankfully mildly, but it is definitely there. So, do I have rosacea, most likely. I flush, I have fair skin, and I have a papillary response to the dry eye caused by Lasik AND I now have developed MDG probably due to the rosacea. So, the new doc is putting me on doxy, warm compresses two times and hopefully that will get the oils flowing...

[y-gwair]

Ok, so my understanding is that there is no definitive test for ocular rosacea (or rosacea for that matter), but markers that you have to have in order for the docs to feel confident that you have it. One of the markers of ocular rosacea is a papillary response under the eyelids. I definitely have that, although thankfully mildly, but it is definitely there.

Thanks, that's very interesting. I have other skin problems, including recurrent boil-like sores on mucosa, I'd assumed they were yet another manifestation of connective tissue disease, but wonder if they might be due to rosacea? When you have a condition with multiple manifestations, it's quite hard work following them all up. Next stop a dermatologist perhaps.

My meibum seems to flow ok, though I suppose it still may not have the right make up of lipids. Have been taking flax oil and pharmaceutical-strength fish oil for months, plus doing nightly compresses, still no benefit to lid swelling/pain.

[Margaret]

the sores, are they on your face or on your eyelids? My doc said for sores on eyelids (MG's) Azasite is good for that. If I were you I would go on the Rosacea Community Support website. They have all sorts of ideas for facial rosacea and I wrote down some ideas for my eyelids as well (steroid creams, promiseh cream for bletharitis, which I have very mildly) etc. I think reading that community forum last night gave me a lot more hope that there will be a combination of drugs that will make us more comfortable and into a "nuisance" category vs. an all life encompassing category. Some of those people said it took them years to figure it out as well, etc. Also, dermatologists - good ones are hard to find. I think you will have to see a bunch of them to get the best idea of what you think you have. Also, I'm thinking about seeing an internist or a rheumatologist and maybe they have a better understanding than even a derm... just food for thought!

Margaret

[y-gwair]

Thanks, I'll have a look on that group, might help to throw some light on what's going on.

Also, I'm thinking about seeing an internist or a rheumatologist and maybe they have a better understanding than even a derm... just food for thought!

I saw a rheumatologist re. sores when my GP thought they might be consistent with Behçet's disease (oral, genital and all around chin); once they'd ruled out this or other kinds of vasculitis they lost interest in the skin problems; current rheumatologist thinks it's a combination of anaemia with UCTD, though they hydroxychloroquine hasn't had any effect on them.

[Margaret]

you also might try a naturopathic. They won't give you any cure by any means, but they tend to test everything known to man and they might catch something that a specialist won't (since the specialist usually only concentrates on the limited knowledge they have on their specialty). I found out through my naturopathic doctor that I was low on magnesium, something my western doc didn't test for through my annual physical. So, you might try that as well. it's expensive though because some of the tests the insurance co won't cover (and be careful because some tests aren't validated by the western medical docs).

[y-gwair]

To be honest, I can't afford to do anything other than mainstream, which I have been paying for out of my own pocket having been refused a referral to local ophth. by my doctor, despite a recommendation from the rheumatologist to do so; I was sent away with no treatment when I tried to get treatment via the Eye emergency department. If I see my ophthalmologist again, it will have cost the best part of £1000 including 5 consultations and private prescriptions, and despite improvements I really don't feel we are much nearer finding the root cause of the problem and is gradually eating up the remainder of my savings (not to mention loss not being able to work for 6 months).

I could try to force my doctor to refer me to the same ophthalmologist via the NHS (now that it is clear that there is a significant problem), but that would probably take months to go through the system.

Anecdotally, from what people say on Sjogren's groups here, no one seems to be referred to ophthalmology until their severe dry eye results in a fairly major corneal injury (ulceration/tear), partly because rheumatologists think it's controllable with drops/lubricants. This might be the case if the problem is simple aqueous deficiency, but most people's eye problems seem to be more complex than that.

[y-gwair]

Thanks for the link to the Rosacea forum - what I have round my chin looks more like peri-oral dermatitis, although the bumps are deeper, painful, and only rarely break the surface; my lips are painfully chapped as well and the chapped/peeling skin also extends inside the lips too.

Not convinced that these symptoms are entirely related to dry mouth as no one else with oral sicca seems to have these problems. Oral specialist was lost for an explanation last year (other than B12 deficiency, which came back normal). Really need to get to the bottom of this.

[littlemermaid]

Y-gwair: You need regular ophthalmology follow-up in the NHS for eye condition with rheumatology. Your GP is wrong. What better case could you have: rheumatologist consultant recommendation, unable to work, sleepless nights of agony, private diagnosis from international eye hospital. Chronic inflammation, associated recognised conditions. Time for a new GP?

[y-gwair]

Yes indeed!