untreatable dry eye

[UGH_my_eyes]

Yeah I haven't seen Rebecca call anything untreatable, but if you play with that search engine enough and read enough threads, you start to get the impression that most of us are fighting a battle we cant win. For every success story there's like 10 OMG, I hate life, my eyes are shot stories.

I definitely feel the OP's pain. Every time it looks like I've found something that might work, I'm back to the drawing board again in a few days and feeling miserable. Very discouraging when your treatments not only fail to help you, but you also have to sit and watch your situation continue to deteriorate month after month.. It's torture.

[tearless2]

Poppy,

I am trying to think of some other items to help you. Here are three ideas:

1) Here is a copy of what someone who has triumphed over ocular rosacea wrote in an earlier post. It includes the link to the all-natural rosacea treatment.

"In addition to IPL, I also used Finacea to treat my facial and ocular rosacea. I also used Oracea (doxy 40mg) for about a year. I have tried a lot of different things over the years and generally found that the "big guns" worked best.

About 2 months ago I ordered (on a whim) a product online - which I never do. It is a product called Riversol that a Derm in Canada is making and marketing. I read a short article about Riversol on the Rosacea Support Group (I spend far too much time on these forums...)

http://rosacea-support.org/riversol-...a-product.html"

2) Is there any chance one of your eye doctors if they are going to medical conferences might have samples from pharmaceutical companies for you to try? Since it is so difficult to get the drugs you need? Is there a way to pay out if pocket for them through an international source?

3) Finally, here's a copy of the eye Dr who fits sclerals in Australia:

"He's in Melbourne, his name is Luke Arundel and works at Richard Lindsay & Associates, Ph: (03) 94176444. These mini-scleral lens cost $700 each"

Tell us if in particular if you contact the last Dr. It would be interesting for everyone on this forum to hear if he was helpful.

[Hopeful2]

Apparently, the company in Canada that makes Riversol, will send out free samples. They do have a web site (google: Riversol, rosacea, dermatologist and Canada).

[Rebecca Petris]

Yeah I haven't seen Rebecca call anything untreatable, but if you play with that search engine enough and read enough threads, you start to get the impression that most of us are fighting a battle we cant win. For every success story there's like 10 OMG, I hate life, my eyes are shot stories.

Yup, exactly, that's the dangerous illusion I worry about on this board.

Dangerous because it's all too easy to believe that this is the norm.

Illusion because it's artificially selected... first of all because this board attracts all the people who are in some stage of a dry eye crisis (we don't see all the people who have gotten better and gone away) and second because when we're influenced by the fear of not getting better we filter out anything that has more hopeful news in it or rationalize why "those" people are too different from you to BE you in the future.

Wish there were an antidote, but I don't know of any

[littlemermaid]

In addition to IPL, I also used Finacea to treat my facial and ocular rosacea. I also used Oracea (doxy 40mg) for about a year. I have tried a lot of different things over the years and generally found that the "big guns" worked best.

Poppy, Interesting you had definite eye relief on short-term Amoxycillin. Doxycycline is not the only oral antibiotic to try. This is another good reason to take control of your healing.

someone who has triumphed over ocular rosacea

I am following spmcc on this too on managing constant MGD/rosacea. It would be good to know whether you ever see clear meibom and to know that you are doing the usual things, oils, diet, eliminating sensitivities, to achieve this. None of these useful ideas are coming from the ophth or derm, much as we love and respect 'em. We are now managing clear meibom on/off.

[UGH_my_eyes]

That's a good point.

Yup, exactly, that's the dangerous illusion I worry about on this board.

Dangerous because it's all too easy to believe that this is the norm.

Illusion because it's artificially selected... first of all because this board attracts all the people who are in some stage of a dry eye crisis (we don't see all the people who have gotten better and gone away) and second because when we're influenced by the fear of not getting better we filter out anything that has more hopeful news in it or rationalize why "those" people are too different from you to BE you in the future.

Wish there were an antidote, but I don't know of any

[MaryVa61]

Poppy, I'm sorry you've had such a bad time with your eyes and docs. I can relate. I left eye doctor appts feeling like giving up and toughing it out on my own many times because of their attitudes (dismissive of my severe pain, no ideas for tx). However, I did eventually figure things out with the help of this group and tips from my other doctors (GP, allergist, dermatologist) even though none of those doctors felt at all confident that they were saying anything helpful. I'm glad now I didn't give up.

As far as dealing with arrogant doctors, you have to kiss a lot of frogs before you find your prince, right? Maybe a young, new doctor wouldn't have developed the attitude yet, and would have more time available to your case and enjoy a challenge? I'd either try that next or see the absolute best opthalmologist I could find, probably at a teaching hospital associated with a medical school since they may be less likely to give up (in front of their students!). Sounds like you've seen a good one already, but maybe he's just not the one to figure you out but another will.

Please do be careful with the steroids. Steroids, prescribed by my prior GP before I ever saw an ophthalmologist, is likely what triggered my Glaucoma. And having to use Glaucoma drops is not a good additional obstacle when trying to avoid BAK and manage dry eye. Besides the risk of blindness...

Hang in there.

Mary

[poppy]

What about Salim Okera, head of unit? He looks very much our kinda guy tho' way too happy in his pic.

I was thinking about the weird grin today and realised this must be his lasik face. At the cornea clinic he is like staff at a funeral home - always polite and respectful, yet never smiling and speaking in a quiet, soothing voice. Respecting the mood of his patients, I guess

I am tempted to make a few comments on the pics of some of the other docs there, but I would probably break a few forum rules.

[littlemermaid]

Poppy, 5 days later I'm still laughing about this post while driving the kids around, lucky you've got a sense of humour.

What if this was uveitis? Would he recognise it, where would you go in ACT for treatment? Only private sector lists uveitis. Where he trained, immunosuppressants were barely in use. Again, I'm wondering if you need an ocular inflammation or immunology specialist to diagnose and prescribe (eg Sydney Eye Clinic) since it's barely controlled on steroid eyedrops? Pain is throughout the eye, flashes and floaters, worsening. This is not good.

[poppy]

What if this was uveitis? Would he recognise it, where would you go in ACT for treatment? Only private sector lists uveitis. Where he trained, immunosuppressants were barely in use. Again, I'm wondering if you need an ocular inflammation or immunology specialist to diagnose and prescribe (eg Sydney Eye Clinic) since it's barely controlled on steroid eyedrops? Pain is throughout the eye, flashes and floaters, worsening. This is not good.

I was kind of hoping it was really, really obvious to a doctor whether you had uveitis or not. I do indeed have severe floaters (a gradually worsening floater soup since I got my eye problems) - literally thousands of floaters - and have often mentioned them thinking they might do the dilated eye exam or something, but just get ignored/patronising comment so I shut up about them now. If it wasn't for the dry eye I would be looking for a doctor to do a floater vitrectomy, they drive me absolutely berserk, but I think with the inflammation I have any kind of surgery, especially an elective one, is just not going to happen.

[sharonbaker]

Oh i am sorry for you. i think you should try bimatoprost pill. Hope it will be beneficial for you... Thanks...

[DCRdryeye]

I know I have heard Rebecca mention (somewhere) cases of patients who have truly untreatable dry eye.

I am interested in what the docs and other patients think about the existence of untreatable dry eye.

I believe I have dry eye that is untreatable. My life is only bearable with constant and ever increasing doses of stronger and stronger steroids.

I have actually officially given up on my eyes as of today - cancelled my next eye clinic appointment, and chucked a heap of useless meds in the bin. It actually feels liberating, and I wonder if I'm the only one whose come to this conclusion. I'm currently attempting to source steroids from overseas, thus bypassing the need to visit eye doctors completely.

Poppy I'm sad to see you come to this conclusion. I have not read all the other responses to your post yet, but I've also tried many things for my dry eyes and still believe there is hope. Perhaps your nerves and frustration have overcome you at the moment, but don't give up. I'd also caution you against steroid drops. It's difficult to suggest what to do without knowing your history but I recall Rebecca saying how often she hears people say "I've tried everything", chances are...they haven't.

If steroids are working to some degree for you then it's a signal telling you the problem is "inflammatory". Dr. Latkany often says dry eyes is mostly an inflammatory condition. So on the bases you are not on blood thinners, take "natural" anti-inflammatories. The secret to success is both the "quality" and "quantity" of the supplement you take. Natural remedies work if done correctly. Considering you're not on blood thinners, take at least 1,600mg of EPA a day (don't just buy "fish oils" without knowing the concentration or reputation of the company, many are rancid and not worth your money), take a large dose of curcumin, bromelain and quercetin. Stay away from "white" foods such as milk, white bread, pastries, sugar...they will exacerbate inflammation. Alkalize your body by using a special supplement or invest in a water filter. Exercise and drink plenty of water...All will reduce inflammation (and without steroids). The beauty is you can use these natural remedies long term with 100% safety.

Poppy I don't know what age you are, female/male ?... regardless it's always best to get a full hormonal profile done, thyroid, cortisol and various vitamin/mineral levels checked. As we get older we "dry up" due to reducing hormone levels. These can be ammended!!

Don't give up poppy! I'm not!! I am travelling to Melbourne tomorrow to see my optometrist for my scleral lens check up. I've been wearing just one lens on my left eye all week and noting the changes. It's been my 5th trial with scleral lenses! I've tried different types and brands of scleral lens, all did not work for me but I will never, ever give up. If I have to go to Boston, I will. Fotunately, I've found a new scleral design, available in Australia and an excellent Scleral fitter. This fifth time around is more comfortable and I'm feeling more optimistic. Also, In January I'm seeing Professor Anthony Hall in East Melbourne for other strategies.