advice on cyclosporin?

[mrunicorn]

hello all

Thanks for all the advice. A few things to reply to!
First, Schirmers test result was 8mm, TBUT was 4 seconds, sorry for the possible confusion! 8mm is slightly lower than 'normal' but not considered low enough to consider Sjogrens etc especially given there are no other related symptoms such as dry mouth. Thyroid tests came back normal and there are no family members with autoimmune conditions.
Difficult to say about the quality of the meibum-- some clear oil seen, occasionally some thick. Seems to be low quantity and hard to express? We're not getting very clear opinion on this. Optometrist described glands as 'capped' rather than 'blocked'. No-one has mentioned demodex but she has been using very dilute teatree oil shampoo for lid hygiene.

She hasn't used nasal steroid, many years ago tried using antihistamines for the rhinitis but didn't help. She has had some courses of anti-depressants over the years but nothing within 2 years of the time of the eye trouble starting. Since November last year she has been taking mirtazapine (7.5mg) but has recently stopped. No obvious worsening of eye symptoms with this.

Pain usually not severe enough to consider systemic painkillers. Not considered autologous serum, corneas are reported healthy so don't think there's much chance of NHS doctors suggesting this. There was some discussion from last consultancy of whether wearing soft contacts even for short periods could help with symptoms. It's worth mentioning that the trouble seemed to start around same time as reduction of contact lens wear--no idea if the two could be related. Additionally at one point an allergy to contact lens solution was diagnosed, but she hasn't used lenses for 18 months--this allergy may have been some kind of trigger though?

I hadn't heard of scleral lenses, will look into this--suspect there would need to be severe corneal disease for doctors to consider?

thanks again to everyone!

[bookwoman]

My corneas are actually healthy. My doctor was willing to let me try anything that might relieve the pain and give comfort. The serum tears definitely help with that. I would not have qualified for scleral lenses based on clinical findings either, but the pain had progressed to the point where I could not read or use a computer or tolerate going anywhere without moisture chamber sunglasses. I guess it depends on how much this disease has prevented your wife from engaging in work, life and fun.

[NotADryEye]

Difficult to say about the quality of the meibum-- some clear oil seen, occasionally some thick. Seems to be low quantity and hard to express? We're not getting very clear opinion on this. Optometrist described glands as 'capped' rather than 'blocked'. No-one has mentioned demodex but she has been using very dilute teatree oil shampoo for lid hygiene.

Even a few meibomian glands producing poor quality meibum can cause a lot of discomfort, speaking from experience. Hard to express would also mean there is not enough flow, and that accounts for the low TBUT. Warm compresses can help a lot, in both cases, if she can tolerate them.

Capped glands prevent meibum from flowing. When that happens, not only do you end up with evaporative dry eye but you also create a wonderful environment for demodex to flourish, exacerbating the problem. Demodex live at the roots of the lashes but they also take excursions into the meibomian glands. I personally hate these little buggers. And if you are allergic to them, all the more reason to battle them. The tea tree oil shampoo is a good idea but, it a) may not be strong enough and have more of a detergent effect than tee tree oil effect required to kill the mties and 2) you can develop sensitivities to soap and anything else on your lids, as I have. Just a word of caution.

How to deal with capped mg's with thick oil that is in some cases hard to express? You might consider meibomian gland probing. But also best to find someone first who understands the etiology and treatment of all of these co-morbidities otherwise it's like herding cats. You can never get your arms around the problem.

If you go down the bee pollen route, just be absolutely sure it is local. Here, in Florida, you have to look at the labels on the bee pollen bottles. Some apiaries import their pollen from other states and it is consequently not as useful in addressing allergies to local plants, although the pollen is still be nutritious.

[mrunicorn]

Capped glands prevent meibum from flowing. When that happens, not only do you end up with evaporative dry eye but you also create a wonderful environment for demodex to flourish, exacerbating the problem. Demodex live at the roots of the lashes but they also take excursions into the meibomian glands. I personally hate these little buggers. And if you are allergic to them, all the more reason to battle them. The tea tree oil shampoo is a good idea but, it a) may not be strong enough and have more of a detergent effect than tee tree oil effect required to kill the mties and 2) you can develop sensitivities to soap and anything else on your lids, as I have. Just a word of caution.

Is there some simple (!) way of trying to deal with or investigate the demodex possibility, other than the tea tree oil? Not sure if this is a problem but it would be nice to be able to rule it in or out more definitively. It's difficult to find a doctor (in the UK anyway) who will look into this at this level of detail...

[littlemermaid]

Some know how to look for the tails sticking out of the eyelash follicles, tiny tracks of veins 'telangiectasia' next to the eyelid margins, collarettes around the eyelash bases, general sore redness around the eyelash bases. We've tried putting in fluorescein and plucking eyelashes twice but not actually got a positive but it's tricky to get the little b*s out with the eyelash, apparently. This video by Sarah Farrant is a beauty (needs a strong stomach) - it shows how to look for mites http://earlamandchristopher.co.uk/dr...blepharitis-2/

Doc and I are sure we need to treat for this once in a while, and after the TTO regime we have great looking eyes for the next 3m before she starts to look a bit rough again. http://www.revophth.com/content/c/36411/ At the very least, it seems a nice eyelid margin scrub for a while. And we have found we needed some kind of eyelid margin scrub to keep the eyes good anyway. I would not use 50:50 TTO with rosacea because the stuff stings and is toxic. We are doing well with 1:50 TTO organic shampoo to warm water. It's possible that shampoo ingredients might make things worse, depending on sensitivities.

I've found most UK ophthalmologists are still highly sceptical about demodex. The phrase 'flogging a dead horse' comes to mind. Could be partly why they are not curing people's blepharitis. Mrs Unicorn's optometrist might be interested in having a go at looking for demodex if you show him the RevOphth article and video because it's been quite fashionable in the Optom lit this year and he's got the magnification.

I think there is a ref to demodex blepharitis in the NHS somewhere http://www.nhs.uk/Search/Pages/Resul...&q=blepharitis

You might like this for more ideas on eye cleaning. There's someone just using warm salty water, which I'd not thought of - Eyeworld CME on 'Ocular Surface Disease and Blepharitis' Chicago 2008 http://www.eyeworld.org/supplements/08_09.pdf

Another useful tip has been to use Head & Shoulders as a shampoo once in a while, just in case there's any flora moving in too. And we use antibacterial facewashes too. Keeping in mind I'm talking about someone with controlled dermatitis around the mouth, nose, eyes, that's been diagnosed as a 'rosacea' hypersensitive inflammation.

[NotADryEye]

Yes, as lm says, some can see the mites if they know how to look for them, particularly if you pluck lashes. We found that loose lashes had mites virtually 100%. As a chemist, do you have access to a powerful microscope?

Another approach can be Ivermectin, but you would want to rule in demodex first definitively and try topical treatments before trying oral/systemic, IMO.

[mrunicorn]

Thanks all. Some great advice which I will look into. It might come down to wheeling out the microscope!

[NotADryEye]

Be warned, demodex are hideously ugly little buggers. Ugh! You might Google them first so you know what you're looking for.