untreatable dry eye

[poppy]

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.

[Irina2]

Dear Poppy,

I am sorry to hear you have not had any success in treatments except increasing doses of steroids. I would like to caution you against using strong steroid drops without eye doctor's supervision as such use may lead to severe and blinding glaucoma or fulminant infections. I hope you can find a doctor who you would be knowledgable and comfortable working with but you do need regular eye exam to prevent devastating vision lass from steroid-induced glaucoma of infections.

Hope it helps!
Best wishes,
Irina Ganelis, M.D.

Los Angeles Eye Institute
http://LosAngelesEyeInstitute.com

[Gabriel]

Poppy, I always hate seeing someone else suffering from dry eyes. I think that for most of us sufferers all we can do us try to treat the symptoms with drops and such. Unfortunately there's no magic bullet out there for this. Also, most Dr's don't know how to treat dry eyes, so most there are lots of wasted trips to the office. Try and hang in there. Hope you find relief soon.

[tearless2]

Poppy, I am so sorry you are having such a horrible time. I was in unceasingly bad pain about 2 years ago and felt completely hopeless as well.

I read over some of your previous posts. I saw that you saw Dr. Chan in Sydney in September and that he recommended a few things for you as well as Dxing you with rosacea. Here are some questions I have and perhaps your answers will help all of us here at Dry eye zone to brainstorm some ideas for treatment:

1) Did you start the restasis? How long have you been on it?
2) Did you get the plugs he said he might try with you if things weren't getting better?
3) Dr. Chan said you have severe rosacea. Have you seen a derm for this? what are you taking to treat it?
I am not an MD but I think some people said doxycycline was helpful and someone wrote in last week about an all natural treatment made by a doctor in canada for rosacea that helped her dry eye a lot.

Please go back and speak with Dr. Chan. From posts, it sounds like he is a good dry eye Dr. in Australia. Even if he has given up on you after only a few months DO NOT give up on yourself. Find another Dr. or keep researching ideas in posts. Please be safe in your use of steroids, I think there are treatments for your dry eye that you haven't tried yet. I do not want you to get blinding glaucoma.

[Hopeful2]

Poppy I am so sorry to hear that you are going through so much hardship with your eyes. I too have felt frustration with my eyes and the various treatments I have received.

About a month ago I was so discouraged and beaten by the pain I was experiencing that, on the advice of psychiatrists, I went on an antidepressant. It was supposed to take away my eye pain and help me to cope better with my dry eye situation.

Long story short, the medication did nothing for my pain, made me feel more anxious and contributed to me losing seven pound ( I did not have weight to spare). My gut told me that they weren't going to help. My gut told me that I would need to do something.

I feel blessed to have discovered a strategy that would help me with my eyes. I developed an eye relaxation technique about three weeks ago. I noticed right away that the pain in my left eye diminished and the pain in my right eye was slightly reduced. I was thrilled to notice that as I did these exercises both my mouth and eyes became more moist. I have recently started meditating, this brings me calmness, healing and hope!

I have also:
-reduced sugar
-started taking cucumin by Biomor (thanks Jads!)
-stopped crying (after my poor lasik outcome I was devestated and felt like my life was over)
-use cognitive psychology (positive thoughts)
-reduced artificial tears ( my eyes feel more moist with my eye exercises)

All of the things I am doing right now feel right for me. They may not be helpful for others because we are all different. And I do not know exactly how much each treatment strategy is contributing to my sense of wellness. I do know that I sense I am doing something that will help me. I believe that my eye exercises are helping. I expect that my body will heal itself.

Try to find one thing that you believe will help you either with your eyes or emotionally. Take that one treatment and recognize how over time it is helping you. I think that once we start to heal and believe we can and will heal, there is a huge energetic shift in our body and the physical body responds. Ultimately our bodies heal themselves. Medicine might provide a little boost in that direction but it is our bodies that do the work of healing. They are the magic!

Wishing you patience on this journey,

Hopeful2

[poppy]

Poppy, I am so sorry you are having such a horrible time. I was in unceasingly bad pain about 2 years ago and felt completely hopeless as well.

I read over some of your previous posts. I saw that you saw Dr. Chan in Sydney in September and that he recommended a few things for you as well as Dxing you with rosacea. Here are some questions I have and perhaps your answers will help all of us here at Dry eye zone to brainstorm some ideas for treatment:

1) Did you start the restasis? How long have you been on it?
2) Did you get the plugs he said he might try with you if things weren't getting better?
3) Dr. Chan said you have severe rosacea. Have you seen a derm for this? what are you taking to treat it?
I am not an MD but I think some people said doxycycline was helpful and someone wrote in last week about an all natural treatment made by a doctor in canada for rosacea that helped her dry eye a lot.

Please go back and speak with Dr. Chan. From posts, it sounds like he is a good dry eye Dr. in Australia. Even if he has given up on you after only a few months DO NOT give up on yourself. Find another Dr. or keep researching ideas in posts. Please be safe in your use of steroids, I think there are treatments for your dry eye that you haven't tried yet. I do not want you to get blinding glaucoma.

Yes I did try the restasis (generic cyclosporine actually). After about 6 weeks I attempted to reduce steroid use somewhat as was the plan and as always any reduction in steroids results in a rapid and ever increasing worsening. My research since then and feedback from another eye doc is basically; restasis is a mild anti inflammatory. For someone like me who still has large amounts of inflammation even after being on strong steroids for a long time (by observation of the eye doc, I am not talking about inflammation that is visible to me), and keratitis that just won't budge, restasis is going to make such a small amount of difference that it really isn't worth the trouble of obtaining.

I have tried temporary plugs. Not really sure whether permanent plugs would help me, but with a problem that is clearly primarily inflammatory, I am really not sure they would be a good idea. Inflammation is supposed to be cleared up prior to plugs being inserted and theoretically a short burst of steroids is supposed to clear inflammation and allow the plugs to be inserted. But in my case, 6 months + of strong steroids cannot clear my keratitis and inflammation. They take the worst of it off and make life bearable, but it is impossible for me to reduce the inflammation to a low level. Thus plugs probably not a good idea.

RE rosacea, I have not seen a derm because my skin has only mild signs of rosacea (eg flushing, redness). I have tried doxy and other antibiotics which did zero. I have had facial IPL to control facial redness which had no benefit for my eyes.

I think the main problem with me is symptom relief can do pretty much zero for me. So it's not a matter of finding something that will help my symptoms or even changing my lifestyle completely. My symptoms are actually much less than would be expected. By the time my symptoms are disabling according to me, there is major and ever worsening stuff going on on my cornea according to the docs, and when your corneas are literally getting trashed more and more every day, no amount of fish oil or avoiding air conditioning is going to do diddly squat. When I saw Dr C, he still rated my problem as clinically severe, yet to me, my symptoms at the time were manageable - and I scored very low on the dry eye questionaire - as I was taking steroids. So, this is why I believe I have dry eye that is only treatable with steroids and nothing else. There is simply nothing else that can control inflammation apart from steroids.

[littlemermaid]

Poppy, As you know, we are dealing with similar, thank god for steroids because I know where we'd be without them.

I am following MaryVA61 very closely on her success with identifying and managing hypersensitivities, bless her for giving us this. And listening carefully to Hopeful2. We are resigned to eye steroids while we think about restoring meibom with usual treatments (which is working on/off) and thinking about allergy/hypersensitivity.

Have you gone off the new guy then? Also prednisolone still not available? I'm wondering if the cornea team at Sydney might be better on access to drops, plugs, autologous serum, sclerals? Also, as Tearless2, we were thinking you quite liked Dr Chan?

Plugs/inflammation: LM has permanent plugs with keratitis (3y), chronic surface inflammation controlled only by steroid and tear drops + chronic reinfecting lid margins + ongoing SPK. She likes them. It's going well as long as bacterial infection of lid margins is managed, which you don't have. People report big improvement on tear film with plugs, thus reduced surface inflammation. Dr C was suggesting plugs so that might be good.

It would be good to hear you have a GP on the job, esp on the depressing aspects of finding a knowledgeable ophth to work with you and dealing with this every day. Emergency GP walk-in is good for despair and gets eye clinic action. I've done it, so have others here.

I agree very much, it's liberating to take charge. I won't say you can't check your own IOP because you could with a tonometer... but, as Irina says, you need frequent monitoring on the surfaces and lenses and access to any new treatments. Cataract surgery is difficult with this, you may not get it locally.

When you make progress on this in your region, it's also for everyone else who isn't online or hasn't found the website. It would be so good if you could find other sufferers to compare experience through the hosp eye clinic. Thinking of you.

[Hopeful2]

Poppy,

I think I understand better the severity of your dry eye. . . pardon me if you have spoken of this in a previous post. Have you considered getting fitted for sclerals or the Boston PROSE device? Theses lenses cover and vault your entire cornea, keeping it moist with saline.

It may be somewhat tedious to find the exact fit, but if you can get a set that works, this may allow your corneas to heal. I have read many accounts of people with very dry eyes finding relief with the scleral lenses.

I am sorry I can not offer any advice on the more technical end of cornea treatment. Littlemermaid has a great deal of experience and knowledge in this area : )

Hopeful2

[poppy]

Poppy, As you know, we are dealing with similar, thank god for steroids because I know where we'd be without them.

I am following MaryVA61 very closely on her success with identifying and managing hypersensitivities, bless her for giving us this. And listening carefully to Hopeful2. We are resigned to eye steroids while we think about restoring meibom with usual treatments (which is working on/off) and thinking about allergy/hypersensitivity.

Have you gone off the new guy then? Also prednisolone still not available? I'm wondering if the cornea team at Sydney might be better on access to drops, plugs, autologous serum, sclerals? Also, as Tearless2, we were thinking you quite liked Dr Chan?

Plugs/inflammation: LM has permanent plugs with keratitis (3y), chronic surface inflammation controlled only by steroid and tear drops + chronic reinfecting lid margins + ongoing SPK. She likes them. It's going well as long as bacterial infection of lid margins is managed, which you don't have. People report big improvement on tear film with plugs, thus reduced surface inflammation. Dr C was suggesting plugs so that might be good.

It would be good to hear you have a GP on the job, esp on the depressing aspects of finding a knowledgeable ophth to work with you and dealing with this every day. Emergency GP walk-in is good for despair and gets eye clinic action. I've done it, so have others here.

I agree very much, it's liberating to take charge. I won't say you can't check your own IOP because you could with a tonometer... but, as Irina says, you need frequent monitoring on the surfaces and lenses and access to any new treatments. Cataract surgery is difficult with this, you may not get it locally.

When you make progress on this in your region, it's also for everyone else who isn't online or hasn't found the website. It would be so good if you could find other sufferers to compare experience through the hosp eye clinic. Thinking of you.

Thanks for your post LM. Yes thank god for steroids. I think without steroids I would be either blind from corneal ulceration or I would have killed myself. I read steroid drops only came about in the last generation or two. Thank god I wasn't born 50 years ago.

I'll still get my IOP checked occasionally when I vist an optometrist BTW. I don't have a problem with seeing an optometrist for a routine eye check occasionally - they are "free" here, I don't have to take time off work to see them and most importantly they don't give me attitude like most doctors.

I really wish optometrists were allowed to do more here like they are in the US. Apart from the reduced cost, no waiting times etc to see an optometrist, it's just much more comfortable talking to an optometrist as they don't have that god complex and give you more time. If optometrists could do punctal plugs here, I'd be happy to give them a go as it'd be cheap and easy and simple to go back and get them removed if after a couple of days I couldn't stand them. Seriously, how can you need 15 years of med school to be able to insert a punctal plug? But the eye doc's lobby groups are much too powerful here to ever allow optometrists to expand their business.

Yes I've gone off the new doctor after coming to the conclusion that restasis was never going to be useful for someone with inflammation like mine. And prednisolone is still not available here in OZ, hence I am trying to get it from overseas myself. I am scraping by on some old FML repeats right now (had a pharmacist accidently give me 5 FML repeats once, god bless his soul!)

[poppy]

Poppy,

I think I understand better the severity of your dry eye. . . pardon me if you have spoken of this in a previous post. Have you considered getting fitted for sclerals or the Boston PROSE device? Theses lenses cover and vault your entire cornea, keeping it moist with saline.

It may be somewhat tedious to find the exact fit, but if you can get a set that works, this may allow your corneas to heal. I have read many accounts of people with very dry eyes finding relief with the scleral lenses.

I am sorry I can not offer any advice on the more technical end of cornea treatment. Littlemermaid has a great deal of experience and knowledge in this area : )

Hopeful2

Thanks for your post, sclerals/prose aren't available anywhere in Oz. I would have to fund these privately from the US as well as travel costs. I did think about it, but I'm not willing to gamble that much money when all the other dozens of things I've tried have done nothing.

[Rebecca Petris]

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

Poppy is there any chance you could find a link to this? I am really concerned if I have put across that kind of message because it's not something I really consider to be true. I don't want others to read something I've said and come away with that impression so I'd like a chance to correct myself if I've miscommunicated.

I have to echo all the others here re: steroids. Very, very scary and dangerous to self-treat with steroids, or in any case to continue with unresponsive keratitis with no supervision.

I am so sorry that you are in such a discouraging place right now. I know there are so many who can sympathize! I would really strongly encourage you to go back to this doctor. I've seen over and over again over the years how persistence pays off in situations where people thought it never, ever would. I would also encourage you not to make assumptions about inflammation. There is new work in science all the time in this area, sometimes raising serious questions about the role of inflammation in various types of dry eye. Hard to keep the faith but we have to keep at it and in due course we find the healing we need, physically and emotionally. Hang in there. We're all pulling for you.

[poppy]

Poppy is there any chance you could find a link to this? I am really concerned if I have put across that kind of message because it's not something I really consider to be true. I don't want others to read something I've said and come away with that impression so I'd like a chance to correct myself if I've miscommunicated.

I have to echo all the others here re: steroids. Very, very scary and dangerous to self-treat with steroids, or in any case to continue with unresponsive keratitis with no supervision.

I am so sorry that you are in such a discouraging place right now. I know there are so many who can sympathize! I would really strongly encourage you to go back to this doctor. I've seen over and over again over the years how persistence pays off in situations where people thought it never, ever would. I would also encourage you not to make assumptions about inflammation. There is new work in science all the time in this area, sometimes raising serious questions about the role of inflammation in various types of dry eye. Hard to keep the faith but we have to keep at it and in due course we find the healing we need, physically and emotionally. Hang in there. We're all pulling for you.

Hi Rebecca, I tried to find your comment again re the untreatable dry eye and couldn't. I do remember it was referring to a lasik patient and was in some kind of anti-lasik paper or video. I think the lasik patient had lost their job and their life was a disaster, they might even have tried to kill themselves or even done so and you'd made some kind of comment to the effect that their dry eye wasn't treatable. It wasn't a general comment relating to all kinds of dry eye sufferers.

[littlemermaid]

What about Salim Okera, head of unit? He looks very much our kinda guy tho' way too happy in his pic. PM me if you want. Could be you've already been there, done that. He could definitely whack in some plugs in 2 secs in his tea break. He will be keen on keeping his grafts healthy and should have the full arsenal. At the minimum, he might be up for some free advice or pointers Dr Salim Okera

As an eg, DCRdryeye has sclerals from a Melbourne optometrist. There is plenty of hope here for future comfort. http://www.dryeyezone.com/talk/showt...eral+australia

They will work with me and formulate solutions, work with scleral manufacturers in Australia and if needed, go as far as ordering a scleral set from overseas...absolutely whatever it takes!!

Worried you're not talking about tear substitute drops, LM is dropping at least 6/day to keep the cornea as good as possible. What sensations are you having now? It is scary when the ophth describes what they see but I've read the cornea heals very fast if allowed, much quicker than normal epithelium. So we need to give it the best possible conditions to enable this.

Re untreatable. LM and I discuss this ongoing in the 'have you done your eyedrops' context. She says out of 180 in the year group at school, there's a good proportion dealing with stuff - post-surgery back pain from sclerosis, type 1 diabetes injecting 6/day, epilepsy with brain deterioration, the big C. Girls dealing with it best are working with what they have rather than what they haven't. Where we hang out, the kids are 75% unfixable. I know it's not easy but a decent doc and regular monitoring appointments make a huge difference and enable us to get on with things she wants to do as long as we keep those corneas going fine. Again, thinking of you. This sounds like a patch of depression, see the GP. Love from London

[poppy]

What about Salim Okera, head of unit? He looks very much our kinda guy tho' way too happy in his pic. PM me if you want. Could be you've already been there, done that. He could definitely whack in some plugs in 2 secs in his tea break. He will be keen on keeping his grafts healthy and should have the full arsenal. At the minimum, he might be up for some free advice or pointers Dr Salim Okera

As an eg, DCRdryeye has sclerals from a Melbourne optometrist. There is plenty of hope here for future comfort. http://www.dryeyezone.com/talk/showt...eral+australia


Worried you're not talking about tear substitute drops, LM is dropping at least 6/day to keep the cornea as good as possible. What sensations are you having now? It is scary when the ophth describes what they see but I've read the cornea heals very fast if allowed, much quicker than normal epithelium. So we need to give it the best possible conditions to enable this.

Re untreatable. LM and I discuss this ongoing in the 'have you done your eyedrops' context. She says out of 180 in the year group at school, there's a good proportion dealing with stuff - post-surgery back pain from sclerosis, type 1 diabetes injecting 8/day, epilepsy with brain deterioration, the big C. Girls dealing with it best are working with what they have rather than what they haven't. Where we hang out, the kids are 75% unfixable. I know it's not easy but a decent doc and regular monitoring appointments make a huge difference and enable us to get on with things she wants to do as long as we keep those corneas going fine. Again, thinking of you. This sounds like a patch of depression, see the GP. Love from London

LM I have seen Okera, problem is his cornea clinic at the local public hospital is no longer able to supply scripts! Okera tried to get me azasite and prednisolone but the hospital pharmacy can't supply them so it's all a waste of time....

[littlemermaid]

Maybe an ophth could order safe prednisolone from abroad through private practice for you, altho' if FML is working that would be better. In terms of 'untreatable', isn't he your best option for ongoing? Has made a start organising pathways for your region. He's probably not thrilled about the pharmacy problems himself. I think it's good to stay on his list and keep turning up for monitoring because then he's got your records. As above, he will be going to the conferences and thinking about this, coming back with the latest.

We're getting the 'you have to manage this yourself now' feedback - is this what's happening to you? This is when I started doc-shopping for better monitoring. I wouldn't think Azasite's a miracle ointment anyway unless it's chronic bacterial blepharitis, just has increased penetration which you may or may not want on your eyeballs. Are you still getting erosions?