Very very dry eyes

[Beatriz]

Hi, I've been a dry eye sufferer for a little over e year now. It al started at the time when my mother was dying of lung disease and I was on antidepressants (some doctors say this combination may have trigered it!? Sjogren syndrome was ruled out through a salivary gland biopsy as well as thyroid problems. I have had both temporary and permanent plugs fitted in my lower punctae; I take supplements of fish oil and omegas 3, 6 and 9; I apply hot compresses twice a day and use a cold masque as well.
I have also been on cyclosporine (0.1%) for three and a half months accompanied on and off by cortisone treatment according to need. Needless to say that my quality of life is non existant - I can no longer drive which is a catastrophe as I live in the middle of the countryside in France and reading and writing are painful.
I wondered if anybody had any experience with cyclosporine? do 3 and a half months of treatment qualify as enough to decide that this treatment does not work for me or do I have to go the whole up to six months recommended?? are there any other options out there apart from the ones I have described? Any help or feedback on this WILL BE GREATLY APPRECIATED! THANKS

[UGH_my_eyes]

Welcome.

Sorry to hear about your mom. My dad recently passed from COPD, and strangely enough, that's when my dry eye went crazy...months before he passed, it began.

I've tried temporary plugs and they did nothing for me.

Have not tried restasis yet so I can't comment on the cyclosporine.

This site is very helpful. Read enough of it and you will probably know more about dry eye than most doctors do.

[littlemermaid]

I live in the middle of the countryside in France

Hi Beatriz, Have you found an ophthalmologist you like for regular visits? Are you managing with artificial tears through the day and wraparound moisture goggles?

Does the ophthalmologist know what the problem is? Whether the insufficiency is aqueous or meibom, for example? Whether you have allergy? Sometimes they are not experienced and cannot tell us, and we need to find an expert.

I am following the research of the National Center of Ophthalmology, University of Paris, and Thea Pharmaceuticals, hoping they can develop drops and products to help us. I have found it well worth while for a better diagnosis to seek out the most forward-thinking cornea/external disease and eye surface specialists who are researching the condition for diagnosis and to access the latest treatments and their ideas. There are good research bases in many French university hospitals for cornea and anterior segment. I do hope you can find some kind help with this near to home and I am so sorry if it means long journeys. It took me a while to accept that we had to do this, but now we travel to access diagnosis and the latest suggested treatments, then we self-manage.

I hope you can find ways of managing this to improvement. If things get worse or are not improving, it's important to pursue better medical attention. It is promising that you can access cyclosporine so quickly, and I think there is a good choice of preservative-free tear substitute drops in France. But there could be a missing component in the recommended treatment, eg if you had undiagnosed mgd which could be improved with antibiotics, or allergy, or sensitivities to drops which could be improved on. Very warmest good wishes for your healing and better comfort.

This VisMed video by Prof Christophe Baudouin is good, if you haven't seen it. The vicious circle and toxic tear explanations are very helpful for us, and show how various elements of the problem need treating at the same time. http://www.trbchemedica.com/index.ph...=100&Itemid=61. You can search on his name in PubMed for the latest research of his team.

[PotatoCakes]

I was told by one doctor that for some people, it can take 9-12 months before they feel a difference with Restasis. Stick with it, if you can. I'm now on compounded cyclosporine and am hitting the 9 month mark and I *think* I'm feeling a difference with that and some other things I am doing. I certainly feel better this year than I did last year around this same time, which is a good sign. I'm no where near "normal" but definitely better than I was.

Other things that have been helpful - low dose antibiotics (currently I take 250mg Tetracycline every other day), autologous serum drops and, as you already mentioned, fish oil. While it didn't help me produce tears, I did find acupuncture helped with my stress level and that, in turn, I believe, helps me deal with my eye issues. Make sure you are consuming enough water; most people don't and while it may not cure you, dehydration will make things worse.

[bunnyrabbit123]

Oh I do hope the 9-12 month thing is true and not something your doctor is just saying as I 've been on Restasis for 6 mos now and don't seem to have any noticeable difference in the dryiness of my eyes. My corneal dr. just pushes OTC drops at me now and I'm in despair as to what to do next.

[PotatoCakes]

Bunnyrabbit123 - Have you considered serum drops? They've made a huge impact on my life. There are some really good posts here about serum drops, if you do a search.

[sazy123]

Oh I do hope the 9-12 month thing is true and not something your doctor is just saying as I 've been on Restasis for 6 mos now and don't seem to have any noticeable difference in the dryiness of my eyes. My corneal dr. just pushes OTC drops at me now and I'm in despair as to what to do next.

Hi, interesting about the 9 month restasis improvment... Has anyone else had this experience?

Ive been on restasis for 6 months before (using one vile and keeping in fridge to make last). But no difference- but then i have MGD- and restasis is not really effective for this (despite what the company says to get more sales IMHO). Only 15% responded to restasis in the trials (at 3-6 months), not sure if they have tested it for longer. And this makes sense when you think that 70-80% of people with dry eye have MGD and 15-20% have aqeuous or mucin deficiency.

Beatriz, im sorry to hear about your situation, I also got severe dry eye after going on a course of antidepressants. So we seem to have a simular cause. Do you have MGD? Is there visible inflammation on your eyes or eyelids?

Plugs arent very good for MGD, only aqeuous deficiency, so if they didnt help- that would be why.

Doxyclycline is something to try, so is Azasite. Also, there may be allergies going on, best to get a skin patch test to rule that out.

Check the quality of your fish oil. You want a high dosage of omegas around 3000 mg/day and a VERY good brand like Nordic Naturals to ensure purity. There are other supplements that people have found usefull listed on the forum.

[Beatriz]

Thank you very much for your input. After changing various opthalmologists I found one in an Eye Clinic in Geneva (20 mins.away fm where I live) who was willing to listen and try several options although he is not very keen on the cyclosporine treatment. At my last appt. I was so bad (could not open my eyes at all but for several seconds at a time) so he told me to consider changing treatments although he could not really offer anything new - he said we could try oral secretagogues (normally given to Sjogrens Syndrome sufferers and works more for dry mouth than eyes! After this I was so desperate that I decided to to see a specialist recommended to me by my mother in law in England. He firmly told me I should stop the cyclosporine as it did not look like it was going to work and fitted upper plugs. He also suggested that perhaps I had slipped into blepharospasm which wd explain why it is increasingly difficult for me to keep my eyes open. He suggested Botox injections on the eye lids to correct this, a procedure he would carry out at my next appointment in a month's time!! does anyone have any experience of this treatment? thanks again for being there!!

[littlemermaid]

Beatriz, Do you want to tell us who the English ophthalmologist is? Blepharospasm sounds like an odd diagnosis. Was it Moorfields Eye Hospital in London? They are usually the most current on treatments. What's the problem with cyclosporine? (we are just about to start it)

[bunnyrabbit123]

Bunnyrabbit123 - Have you considered serum drops? They've made a huge impact on my life. There are some really good posts here about serum drops, if you do a search.

Hi PotatoCakes-
I'm considered and asked for serum drops. I would love to give them a try. Optho says they're a huge hassle to get, needs HIV test, find a place to draw blood, send to Leiter's and they won't help me anyway- Do you have inflammation in your eyes? In addition to the dryness,this is my big problem-the discomfort and embarrassment of how I look.

[PotatoCakes]

Depending on who you go through, you don't need an HIV test (I didn't) but even so, it's worth it IMO. I have inflammation, blepharitis, MGD, you name it. I had corneal abrasions before I began the serum drops but they appear to have healed shortly after I started using the serum drops. Not only have the drops helped with the abrasions but my eyes FEEL much more comfortable. I still have really rough times, of course, but the difference between my serum drops and OTC preservative-free drops is huge. When I'm on the go and using OTC drops, I have to use them much more frequently than serum drops. I hate to say this but it sounds like your optho is less willing to try them because he's lazy.

You might check here: http://www.med.upenn.edu/apps/facult...php/g327/p1398 I did a Google search for Pennsylvania serum drops and her bio came up. The school might have a source besides Leiter's. If you can get them made in Pennsylvania, that would be a lot less hassle. Regardless, I'd push your doctor to learn more about them. There is a lot of info on here; you could print some things out and bring them to him. Or suggest that he contact the doctor in the link and talk to her.

[Beatriz]

So sorry for taking so long to reply!! computer usage is painful at the moment! The opthalmol. I'm seeing in the UK is Dr P. Hodgkins who attends consultations at a private Southampton Hospital (can't remember the exact name). He mentiioned Botox treatment for dry eye induced blepharospasm because I told him I want to be able to drive again and therefore need to maintain my eyes open for longer periods of time. Do you think this is odd? He told me to stop the cyclosporine treatment because after three and a half months I did not see any improvements in my symptons. My opthalmol. in Geneva considers it to be "too toxic" for it to be used for long periods of time. I have since been wondering if if should have carried on for at least another three months??!! I had agreed to stop it because I wanted Dr H to insert upper punctal plugs and apparently the use of cyclosporine is not recommended when all four punctae are blocked. I am seeing him again for the botox treatment??!! next week! I keep wondering if this would perhaps make my dry eyes worse?! I'm beginning to see a '"damned if I do and damned if I don"t" case scenario.

[mgshutterbug]

Moisture chamber glasses, warm compresses, preservative free drops, gel, ointment

And a good ophthalmologist is essential. However, I did not learn of any of those from my ophthalmologist, I learned it from all the really knowledgeable and helpful people here! Generally, I find that I am teaching some of the corneal specialists I've seen, new tricks. The moisture chamber glasses have been an absolute God-send for me. Were it not for those, I don't know that I'd still be here right now. I was out of my mind with pain and dryness, poor visual acuity, RCEs. I would love to wear PROSE sclerals, but have discovered that patients who have ocular neuropathic pain have reported that sclerals cannot be worn if your have neuropathic pain. I have anesthesia dolorosa, which includes nerve damage to the eye. So it seems, that will never be an option for me. But thank God for the 7eye glasses. Good luck to you!

[mgshutterbug]

autologous serum drops!

Sorry, I forgot to mention these! I haven't tried these for several reasons. I can't afford the expense, and my veins are so small, they have a horrible time whenever I have to go to the hospital with inserting IVs. My veins just "blow" so easily, so the serum is not an option for me. I wish it were. I would find a way to deal with the expense.