need help, suggestions, anything...b/c Im running out of options/hope. :(

[chimera]

Im feeling so frustrated & hopeless, I dont know what to do anymore... yes this is gonna be one of those posts...

almost 3 years, 7 doctors, countless drops(both OT & rx) & plugs & other whatevers. Ive felt no improvement. Nothing really gives me any relief for more than an hour if Im careful wth my eyes(keeping them as closed as much as I can ), 30- 40 minutes if its really cold, windy or Im careless.

My current doc is a highly recommended one here, Dr. Tseng, but I guess even there are some patients he cant help. He told me I have MGD & bad oil production & had me do compresses & take desomethasone? for about 3 weeks it didnt work. Tested me for Demodex(came back neg,) then gave me a lipid ointment which is soothing but like everything else only last for 40 min- hour(just like any reg OTC drop.) My last visit he told me to keep doing compresses, & then said he was gonna "let me go." My heart sank b/c i was hoping he'd be the one you know. But he said all i can really do is keep up with the compresses the OT drops & blink as much as I can. Thats it? I asked him if I could at least see him in 3 months for a follow up, he said that was fine if i really wanted to.

I dont want to give up...b/c this cant be it. Ive become a useless invalid thats become unpleasant to be around with. I cant even play with my niece b/c after 10 minutes Im in pain. I cant work or help my mom with anything or be anywhere without being a nuisance who complains about my eyes or it being too cold etc....

now in the meantime I need to figure out if there's anything else I havent tried. I asked Tseng & a previous dr about corneal neuralgia but both told me that my corneas are too healthy for anything like that. Other things Ive tried:

all kinds of OTC drops
Restasis
Lotemax for a few weeks
FML for a few months
serum drops for about a year
Lacriserts
plugs both collagen & silicon
fish oil one 1000 mg capsule a day(I wish I could take more but my stomach cant handle it)
bandage contacts

what else is out there for evap dry eye, Mgd, poor oil layer production? Ive heard of Lipiflow but its odd that no doctors Ive seen have mentioned this at all. Maybe its not in South FL yet?

Ive also seen a lot of other rx drugs/steroids etc... mentioned here but I dont know if they are specific to a condition i dont have. Like I dont have allergies blepth or ocu rosacea. Is it just me or does it seem drs are really reluctant to try rx drugs? Theyll try about 2 & then they seem to give up...i might need a list of drugs I havent tried yet & beg to be given a prescription for some.

Please I need any suggestions, anything thats worked for you that I havent tried, I need more options. B/c this cant be it.

thanks(for reading)...

[Faith1989]

hi chimera,

I have pretty much tried everything u have minus the contacts which I am going to speak to my corneal specialist about but am hesitant. I have also had lipiflow (you will feel great for a week then my glands were all clogged again and needed Steriods) Have you tried Restasis or doxy?? This wasn't on your list... Heh are your eyes red at all? Or just dry? I think I may have ocular roaseca but my doctor just thinks blepharitis which is causing dry eye. I have theses little bumps underneath my lids which I THINK are allergies but haven't tried a good allergy drop yet besides Alrex.. What about trying some other dry eye vitamins? I just ordered Fortifeye and am gunna give his whole "line" of vitamins a shot, check out the website. The woman who I spoke to on the phone said she had a problem with all fish oils and was hesitant to try fortifeye but she did (she has sjogeens) and it didn't give her any upset. Just a thought..there r still options

[alisonW]

I'm in a similar situation but have been dealing with this for 9 years now. I still have hope that something someday will help, but in general I think there is no "cure" for many of us. I think it's a crappy, chronic condition that we just have to live with the best we can. That said, I'm always trying something new. I recently went off the BCP for 6 months, was gluten-free for 6 weeks (didn't cheat at all), and took NAC for a while. None of that helped. I think I've tried pretty much everything out there too. One thing I haven't tried yet, is to see if demodex is my problem. So...that's my new "thing". Since no one around here tests for it, I bought some stuff from Ovante (a lid scrub, hair shampoo & conditioner) to see if it will help. Just don't give up - try to be thankful that you still have your sight - things can always be worse. Keeping that in mind gets me through the toughest of days. {{HUGS}}

[Rebecca Petris]

Chimera,

So sorry to hear where you're at. It must feel terribly discouraging. Please don't give up hope though! There's always more. Sometimes "more" means different treatments. Sometimes it means a slight twist on something already tried. Something it means just plain different pain management approaches with no change to the medical side of things. Sometimes it involves thinking about things differently. Just never can tell.

My questions looking at your list are -

1) Have you tried moisture chamber glasses fulltime. I have known plenty of people for whom nothing, I mean nothing from drugs to Chinese herbal medicine and everything in between, helped BUT moisture chambers did. I know, nobody wants to be the one wearing the dorky goggles but... sometimes it's the difference between misery and getting on with life.

2) What was it about bandage contacts that did not work.

3) Exactly what are you doing now, what's your regimen.

4) Have you ever done a really painstaking period of observation to make sure there's not something your'e taking that is making things worse (or preventing them from getting better)? Surprising sometimes how often it happens... even a simply methylcellulose drop can be a culprit.

5) Do cold compresses help.

6) In your description... you say nothing helps more than an hour or less. Suppose you do something (whatever it is that happens to work) every hour. Can you manage, ie. is pain kept in control reasonably that way?

Is it just me or does it seem drs are really reluctant to try rx drugs?

Usually the opposite if anything But there's only one drug for "dry eye" though several theoretically for MGD. Only common ones I don't see in your list are doxycycline (oral antibiotic often used for mgd) and Azasite (topical usually applied on lid margins, costs the earth but works for some people).

Re: Dr. Tseng... Setting aside the pain issue (which is of course far and away the hardest part to treat) did he feel your MGD was able to be kept in reasonable control with the treatments you're on?

[chimera]

first of all thank you so much for all the responses! I cant beleive how quickly i got replies! I will reply to everyone eventally, if not today, tomorrow, as its so much info & I cant read & write for long periods as the computer is one of the biggest causes of eye pain for me.

Hi Rebecca,

I have been wearing MCGs for 2 1/2 years straight(& Ive only had this problem for 3 yrs,) do they help? oh yes. But they only work so much. I still need to drop hourly. And I wear them all the time except when i sleep(I wear a mask at night) & when i shower.

about the contacts, I didnt notice any difference from when i wasnt wearing them(as in Id still have to drop every hour) & they felt much worse at night.

my regimen right now:
refresh plus drops every hour,
rice baggy warm compress 2-3 times a day,
lipid ointment 1 -2 times a day.
After i put my refresh plus drps at night (I go to sleep around 11:30pm -12:30 am)I might only put it on 1 or 2 more times throughout the whole night until I wake up at around 10 am(I dont work & am a late sleeper.)

with question # 4 do you mean a drop? the only drop I take now are refesh plus & the lipid ointment Dr Tseng gave me. Ive taken some other OTC drops but noticed no difference bw those & Refresh plus

I tried cold compresses a long time ago but I didnt notice they did anything. isnt it the warm compresses that are suppose to help unclog the glands?

question # 5 -I do use the Refresh plus drops every hour. Thats the only way i have been able to manage!

I dont know why no dr that Ive seen has mentioned doxy or azasite to me. But you can be sure Ill ask Dr Tseng about them on my next visit.

Im not sure I understand your last question. I guess he felt that it could be as he gave me no other treatment & was going to "dismiss?" me(I dont know what the correct word is.) I did tell him that i still feel pain & he said he was aware of that but that there was really nothing else he could do.

[Katewest]

I am in the same boat....YEARS of this dry eye and its just getting worse I feel like. Did you try Prose lenses? What about Dr. Latkany's eye spa? If you are doing the hot compresses you might want to add the expression too. In his book I think he said that expression is key.
I made my Boston appointment today after months of back and forth. I go out in May. I have ocular rosacea and MGD. So who knows if they will help. Plus my insurance is being lame so I will have to fight them to pay anything. I scheduled 9 days so I hope that is enough.
Also Chimera, are you doing the compresses too much?
Stay strong, and hopefully something is going to help...all of us!

[soaps]

Don't give up hope .... i am still hopimg that eventually i will b able to drop hourly !!
After many dr visits and meds, prayer helps best and gives me strength for another day.
Wat caused ur dry eye ?
Do try doxy and azythromycin but not at same time. give them some months.
Other things
-NAC
-cut down on medicated wipes but try gentle eye cleansers. sls free products . And 2 mins max compress warm only twice daily. this made a huge difference in pain. my favourite skin body products went in the bin.
- diet healthy .
- vit e, c, d. it won't b magic but it helps .
- good night sleep . Find a good ointment . humidifier.
- laugh !! Listen to a comedy. They say laughter is best medicine.
sending u hugs from Oz.

[32nitrox]

Hi Chimera,
Do not give up! I have a suggestion for you that has not been mentioned. I had Meibomian Gland Probing and it has made all the difference. My glands were blocked by fibrotic tissue so probing them recreated the opening. I had been on Lotemax on and off for 7 months, tried Azasite which burned horribly, Restasis 4x a day, Doxy, Lacrisert...nothing made a big difference. I was unable to drive at night, my secretary had to read my emails to me and was reviewing my LTD insurance options. I had considered Lipiflow but was encouraged by the results of others on the board that had probing done. I'm four months out and am on Restasis, Pataday and rewetting drops are down from every 15 min to every 2 hrs. My doctor is in Tampa, FL, his name is Dr Steven ****** and he is actually the inventor of the probe. I hope this helps. Hang in there.

[Rebecca Petris]

Im not sure I understand your last question. I guess he felt that it could be as he gave me no other treatment & was going to "dismiss?" me(I dont know what the correct word is.) I did tell him that i still feel pain & he said he was aware of that but that there was really nothing else he could do.

Just trying to get a handle on your clinical state right now (as distinct from the pain issue which may, or may not be related anyway - some people have pain because of MGD, some have pain in spite of MGD being well controlled). I can't imagine a good dry eye doctor releasing a patient with out of control MGD, but I can readily imagine them releasing someone with pain that they can't help. In either case though there should be a referral for further help.

Anyway bottom line is, if the MGD truly is as well controlled as reasonably possible at this point - and if you don't know, it wouldn't hurt to call & ask, Dr. Tseng is surely one of the most qualified to say - then lipiflow, probing, doxy, azasite and all that jazz are pretty much moot so it might be a matter of tackling pain itself more directly. PROSE can be iffy for some of these really challenging cases where there isn't major aqueous deficiency but since they have it right there at Bascomb Palmer maybe worth a try if you haven't already? - Also re cold compresses - you're right, warm is for the glands, but cold is also useful strictly for pain, even if you're also using warm ones therapeutically.

[MLE]

Chimera,

I'm so sorry, and know exactly how you feel. I had tried everything, literally EVERYTHING for my MGD and ATD including cautery, MG probing, conjunctivochalasis surgery, allergy testing/hyposensitization, bandage lenses and every drop you can imagine. I was in physical and emotional misery.

Until I got fitted for PROSE lenses. I can't tell you what a relief they have been. My eyes are off my mind. I can read, use the computer, watch TV, garden, show up to work reliably, care for my kids the way I want to, everything I loved doing that I had lost. It is such a blessing to have it back.

I know some people have complained about the edges off the lenses bothering them and other issues, but I don't feel them at all. I wear them for all my waking hours. For me they have been awesome. In any case, if you've tried everything, I think it is worth trying Prose lenses, even if you didn't think bandage lenses did much for you (they didn't do much for me either).

I was fitted at the University of Michigan.

I have been meaning to write about it under success stories, but have been too busy- leading a NORMAL LIFE. Imagine!

-MLE

[peter56]

Hi,
as you will know, dr Tseng is one of the best ocular surface and dry eye expert not only in the USA, but in the world!

I think the Lipid ointment you are taking is the one, that has to be placed above the lashes onto the lids.
Dr Tseng does claim, that there this ointment is slowly melting for some hours and running down on the corneas.
So if you think, that the Lipid ointment does only work for 40 min instead of some hours, please apply that ointment every two hours.
For other severy dry eye patients dr Tseng does recommend applying the lipid ointment 6 times a day.
I know the ointment is expensive - 80USD for a 2g tube??, but it is the best lipid substitute available!


The other Lipid Drops like, Systane-Balance, Cationorm-Retaine-MGD in the USA do dry away even faster.
Mayby you will order some Emustil drops from Moorfields Pharmacy in London.
According to patients here, Emustil are the best of the Lipid drops. But all these drops do only bring release for hours in
the advs of the pharma companies and not in our eyes.

In very dry irritated eyes the necessary drop frequency is every ten min, that means 90-120 drops a day.
So your drop frequence is much to low. It is better to apply a gel like Vidisic.
During night time maybe Systane Nighttime ointment or Puralube ointment from Fera, not the VET ointment.

I don`t know, what brand of bandage lenses you have available in the USA.
We here do use the WUK-Vision lenses from England. They are available up to 22mm diameter and with powers.
If my eyes are terrible, I do insert such WUK lenses - 17-18mm ones and apply gel every 30 min and do wear the lenses 24/7.
Without bandage lenses, you will hardly come out of the vicious circle of irritations and inflammations.

I think it is too early for you to wear sclerals. Sclerals like all contacts do damage and finnally destroy the meibomian glands!
Since scleral are very large - 20-24mm, they do damage allmost all meibomian glands.

The best solution for a irriversible MGD and mild to moderate aqueous tear deficiency is the labial-lip gland transplantation.
Unfortunately, no plastique surgeon in the USA does perform these surgeries.
I do know patients from Spain, Belgium, France and Germany that had almost no more eye problems after this Transplantation.

Peter

[Pinky]

Peter,

I'm wondering what your thoughts are on ProKera as treatment for severe dry eye? I emailed Dr. Tseng directly and he replied "(ProKera's) potent anti-inflammatory action can surpass steroid and Restasis and more importantly circumvent the potential side effect known to both of them. The membrane also contains abundant nerve growth factor that is known to promote innervations which may help correct the ocular surface deficit caused by dry eye and inflammation so that the neuronal reflex can be improved."

Perhaps ProKera would be an option for Chimera?

[sunshinelover]

Hi,

Without bandage lenses, you will hardly come out of the vicious circle of irritations and inflammations.

I think it is too early for you to wear sclerals. Sclerals like all contacts do damage and finnally destroy the meibomian glands!
Since scleral are very large - 20-24mm, they do damage allmost all meibomian glands.



Peter

Peter,
What do you mean by contacts destroy all glands? Do you mean that all people with contacts gets their mg s destroyed?? If so, why would contacts be allowed at all? Is this a undisputable fact?

[Rebecca Petris]

Three years and constant pain... I dunno Peter56, how many years do you think a person has to suffer before trying something which, like everything else they've already tried, might have side effects? And might is all it is. There is literature showing reduction in # of functioning meibomian glands from contact lens wear... basically the idea is that contacts can prematurely 'age' your MGs, since the # of functioning glands declines with each decade of life anyway (ref Arita study showing contact lens wearers to have MGs comparable to a 60-something). Nothing published about gas perm - let alone scleral specifically - versus soft lenses (if I'm mistaken please post a a link to a study) but I certainly would be interested to find out how they compare.

I'm not saying Chimera ought to be in sclerals, but just generally, I suspect those whose eyes are bad enough for PROSE probably won't care too much about losing a couple more glands unless of course they know for a fact their MGD is exclusively at fault.

[MLE]

Yes Peter,

No of fence, but show us the data! You can argue all contacts " destroy meibomian glands" I could argue "all inflammation destroys meibomian glands." Please. Everyone here deserves a substantiated and cited claim so they don't waste any more time and money on something unproven. Desperate people are easy targets. Why exactly do you cite sclerals as destroyers of Mgs? Mine have been stable since wearing them- I've had my oph check.