Frustrating day

[y-gwair]

My NHS referral to Moorfields finally happened today (a mere 6 months after the last ophth. asked my GP to sort it out). I'd been hoping it would be routine, as the issues with perplexing periorbital oedema had been sorted out (sinus infection) and the ciclosporin ointment has had a spectacular effect on my MG function. Didn't see the consultant herself, but her registrar who was very nice and surprisingly thorough and competent. He said that the MG issues seemed to have normalised with the ciclosporin ointment, pretty much what I'd expected. However, my eyes are still virtually bone dry with immediate tear break up, despite plugs. He recommended stepping up lubricants, not something I can really do as I find they aggravate the rosacea element if I take them for any length of time (if I have to choose, the discomfort from aqueous dryness is more bearable than MGD pain).

I suspect the problem is the additional drying effect of the medications I'm taking for vascular rosacea, which are known to have drying effects on mucosa. I'm desperate to get off them because of the dry mouth issues but the flushing/burning is so severe I can't face coming off them; most people in my position seem to have to take these drug combinations for years the prospect of which fills me with horror. I emailed the other rosacea 'expert' about the possibility of laser treatment yesterday, the response was "your subtype of rosacea may not respond to IPL and I am afraid there are no good predictors in terms of knowing in advance if the IPL will provide benefit or worsen the condition."

All of this grief from taking blasted steroids for my dry eye in the first place!

[littlemermaid]

Y-gwair - Just to let you know I am still thinking about this, bit shocked TBH, while we are walking on the pebbly beaches in Norfolk in the rain - heaven, a truly English holiday. We both send you our warmest affection.

Really surprised by Moorfields's zero TBUT, I thought your eyes were feeling more comfortable.

Do you mind me asking, what is your current routine? are you using moisture chamber goggles now?

[y-gwair]

Lucky you, we'd love to spend a few days there at some point, amazing bird life on the Wash, spectacular ruined abbeys, medieval churches, but parents and livestock mean it's difficult to get away. Insanely we used to run the dogs in East Anglia, we had some nice daytrips, but however did we manage 9am starts in King's Lynn in those days?!

Eyes actually feel ok, a bit dry if I work or read, but much better than any time in the last year. I think my corneas must be pretty desensitised by long-term dryness, previous pain and discomfort must have been mainly lid-related. Current routine is just ciclosporin, lid massage (sterilid irritates skin around eyes, and doesn't seem necessary at the moment); no fish oil, as it too results in over-oilyness (caked-up lids, pouring skin); moisture chambers unwearable as foam triggers instant rosaceous burning where it touches (even loose hair will set this off). Will try again with lubricants q.i.d. if the eye surface is as dry as he says.

Patch testing tacrolimus .03% on face to see if it can help control ongoing inflammation/seborrhea (thanks to nice locum), so far no irritation on either of the 2 patches.

[littlemermaid]

Yes, that's what I thought. Are we sure it's TBUT zero? Over-dry eye surface with reduced sensitivity to us has an orange peel tight look and greyish tinge to sclera. Then we bung in more Celluvisc to try to recreate a tear film, close eyes, close puncta for a bit.

Supposed to tease out cotton bud and place threads on sclera to test sensitivity but haven't been able to work out what it should be like.

Thanks for info on testing Tacrolimus, still nervous. Very glad Cyclosporine agrees with you.

Dogs on beaches after September, if you're tempted by weekend break at Blakeney after we've all gone back to school and weather is still humid. Fabulous thunderstorm today. Wonderful new bird-watching cafe at Cley Marshes.

Warmest wishes for good comfort.

[y-gwair]

He said TBUT was no more than a second. Will look closely at sclera, and try threads test.

[littlemermaid]

I.e. threads still sticking out of cotton bud so you lift off again easily, sorry no link just now.

We can definitely see difference between too dry surface and shiny tear film, and look for this all day every day. NeedMyEyes was also talking about looking at the prism, gathering of tear where lower lid meets eye surface - may be worth a google.

LM uses small mirror to check tear film so she knows when she needs to use Celluvisc eg at school because she has no burning or dry eye sensation. Some may think how lucky to be pain-free, but then eye surface vascularises with keratopathy without tear film with no warnings. Alarm watch is not the answer because she uses air-conditioned computer labs, and certain other classrooms cause eyes to dry, we don't know why.

We are dropping Celluvisc >6/day, reducing when tear film is better on 'spiral of improvement' to more healthy function. She likes the viscosity, clings on to surface. We also use Celluvisc to flush surface during bacterial flare-up. Have you got Audrey Hepburn wraparounds, v fashionable this year?

[mgshutterbug]

y-gwair, am so sorry you are having such a difficult time. I had the cotton swab thread test a yr ago to test for anesthesia of the eye. It's awfully scary to have no reaction to it. I wish you the very best.

[y-gwair]

Eyes terrible today, really painful; underside of lids absolutely red raw, I can't believe how quickly they have deteriorated. Only a few weeks ago we were both commenting how much better they were, tolerating fans and air-conditioning without a problem, now they are as bad as they ever have been. The undersides of the lids are red raw.

This deterioration has been quite rapid over the last 2 weeks, parallels starting to take Mirtazapine, in addition to the Clonidine for severe rosaceous flushing. Dr Chu said their effect is stronger in combination, it seems the same may be true of the side effects. I really don't know what to do, they have helped the rosacea, which is unbearably painful, but the drying effects on already dry eyes and mouth are equally intolerable.

I really need to work at the moment, we have an important project with a tight deadline this week, and as the bulk of it is illustration it's not something my other half can do. I know spending long hours over the last few days haven't helped, I have been using systane regularly, but it doesn't seem to help.

To cap it all, tried to call the dermatologist, Prof. Chu, who has been on holiday for weeks only to find he's now off sick with a serious infection/cellulitis (which we've also been battling with one of our dogs at the moment, nearly lost the whole leg; it never rains but it pours...)

[littlemermaid]

So sorry. And very sorry about poor dog. And so very sorry TC's not well, cellulitis eh, the irony - he's an extraordinarily knowledgeable and compassionate doctor and teacher (seen him in action).

We are similar, horrendous bacterial flareup, awful MGD even though the poor kid is on antibacterial drops every day. I haven't used steroid cream or Tacrolimus. I just can't. It'll make it worse, I know it will. I am in despair today. I still can't find a derm who knows how to treat this.

I really need my ophth, he's never there. I'm always on my own with this, trying to adjust the treatment myself.

Systane is your best-available drop? This will pass. It will. Love from us.

[y-gwair]

I am in despair today. I still can't find a derm who knows how to treat this.

I've come to the conclusion they don't exist. I wish I could believe TC when he said these conditions are ultimately self-limiting (he omitted to mention whether he meant on human or geological timescales).

Sorry to hear about LM's flare; these conditions are absolutely miserable, fingers crossed it gets better soon.

[littlemermaid]

Thanks for kind words. I do know where he is if it gets unbearable and unmanageable. I just wish we could taper the FML, it's not possible while the derm keeps flaring.

Sounds agony at your house and we hope you can get enough comfort to enjoy the work. What talent you have. Humidifier from Argos any good? This is the one we've got ultrasonic humidifier £35

geological Just had a quick look around London - who's covering TC's clinics? could you speak to another consultant at Hammersmith or, better, his registrar? These are side effects, need reporting, meds adjusting - yeh, I know it's guesswork/delicate process of adjustment.

[y-gwair]

Thanks for kind words. I do know where he is if it gets unbearable and unmanageable. I just wish we could taper the FML, it's not possible while the derm keeps flaring.

What a pain, hope it doesn't interfere too much with schoolwork and musical activities.

For what it's worth, my skin appears much improved in the last few days, I'm sure the residual swelling in the fat pads around nasal folds is finally going down, pores look much smaller, face looking thinner (even husband noticed). Chin still flushed, spotty/bumpy/scaly. Improvements must be from systemic meds, it's barely a week since starting Tacrolimus (no adverse effects so far). May extend the test areas now, but leave one side for comparison, at least for the next couple of weeks.

who's covering TC's clinics? could you speak to another consultant at Hammersmith or, better, his registrar? These are side effects, need reporting, meds adjusting - yeh, I know it's guesswork/delicate process of adjustment.

Will ring again, they said we should be able to talk to 'somebody', without saying who.

[littlemermaid]

my skin appears much improved in the last few days

Very glad to hear that, hope the effect is cumulative and you can taper eventually. Our best hopes for managing dryness.

Yesterday LM and I were hugging each other, crying in despair. We treated the skin and eyes quite aggressively with antibacs and steroid drops, had a quiet evening making cake , me pouring over the research later to get my confidence back.

It is difficult to manage these conditions. With eyes or brain there's another load of fear added. Thanks so much for posting, y-gwair. It felt like climbing out of a pit, resting after every little step. Eyes and skin are responding well today and we are happy. We can taper steroid and antibacs within the week, get surfaces checked next week.

This is what Rebecca means by finding ways to look after ourselves, using best available. We are lucky and grateful for the help we have. There should be a healthy derm dept at your service in Hammersmith unless it's been rationalised... in which case we'll think again.

[y-gwair]

Yesterday LM and I were hugging each other, crying in despair. We treated the skin and eyes quite aggressively with antibacs and steroid drops, had a quiet evening making cake , me pouring over the research later to get my confidence back.

I'm so sorry, she shouldn't have to be going through this. Cake therapy, we'll have to try that

It is difficult to manage these conditions. With eyes or brain there's another load of fear added. Thanks so much for posting, y-gwair. It felt like climbing out of a pit, resting after every little step. Eyes and skin are responding well today and we are happy. We can taper steroid and antibacs within the week, get surfaces checked next week.

.

Had a related conversation with vet re. cellulitis wound, healing process will be so painfully slow we won't notice it, suggests we photograph it weekly with 50p for reassurance of progress (open wound currently about the size of 3 50p pieces ). Not sure what the equivalent would be for the even more painfully slow progress with our skin problems, but checking back over diary/records makes me remember how much worse it was, even though it's still pretty horrible now.

Tacrolimus area on cheek starting to burn a bit, patch on forehead ok. Hard to say as cheek areas prone to random burning sensations anyway. Expressed pus from a meibomian gland near area that is particularly raw, which makes me wonder if I should continue to use ciclosporin in that eye if there is any possibility of infection?