3 years without successful treatment

[chenpachi]

UPDATES: I figure since I'm so young and an am anomalous case, I've posted an update as a comment on this thread. I'll continue to post weekly updates as I don't think I've seen that many comprehensive post-LipiFlow journals on these forums.

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Hi all, long post incoming.

TLDR; terrible MGD and pain, no treatments have worked, getting demoralized about dry eye.

I first experienced dry eye symptoms at age 17 and its been 3.5 years now. My symptoms are terrible pain from MGD, not aqueous deficiency and no treatment works. Treatments I've tried but failed to get any relief from:

• preservative free lubricant eye drops
• daily warm compresses
• fish oil for several months
• oral doxycycline
• Alrex, Lotemax, FML, prednisolone steroid drops
• 50% autologous serum drops for a month
• Azasite and oral azithromycin
• Cliradex wipes for 3 weeks
• moisture chamber goggles
• Restasis for 10 months
• Xiidra for 3 weeks
• meibomian gland probing (worked for only two days)
• scleral lenses (can't tolerate very well for more than a few hours)

The worst part about all of this is that my symptoms are all much worse than the signs. My meibomian glands are all still intact and no atrophy has occurred, my corneal staining is normal, my tear osmolarity is also in the normal range but my TBUT is 2-3 seconds in each eye and my lipid layer thickness is also below 50.

My ophthalmologist is the director of the dry eye and corneal disease center at a major Ivy League hospital so I have no doubt that she's giving me the best options possible but nothing helps with symptoms. I've also seen a rheumatologist and all the labs were normal for basically every autoimmune disease I was tested for. Every day my eyes are red from dryness and give me pain that gets worse as the day goes on. I'm concerned that my symptoms are already so bad when I'm this young that in the future I'll barely be able to keep my eyes open. The pain is bad enough that it interferes with my work and studies, especially during the winter when it is very dry outside. I have never been suicidal but this pain has made me think that being dead would bring relief from the eye pain. Honestly I'm getting very demoralized about my prospects in the future because of MGD and my symptoms.

Any suggestions on what to try next? I am considering LipiFlow and IPL but both are very expensive and I'm not sure I'd find relief from them.

[hipokrytus]

I won't be of much help, since I myself am looking for answers and you seem to have tried more things than I have. I can only recommend to follow the triumphs section on this forum.
One thing I've learnt is that certain treatments may take a while to take effect. For example, it is only after 6 months of taking fish oil that I've noticed a slight improvement, though I am not completely sure if I owe it to fish oil.
Keep trying different eye drops/gels. I've heard someone saying that GenTeal Severe Dry Eye gel helped them, where nothing else did.
Check your eyelashes for demodex mites.
I assume you've already read your share about dry eyes, but
http://www.dryeyezone.com/encyclopedia/index.html
(also google this: young dry eyes site:dryeyezone.com)
don't stop educating yourself. Assuming that the doctors are the ones who are supposed to know stuff is not a good idea. I've been to a number of clueless eye doctors.
If your symptoms are exacerbated by compouter use, I recommend this thread
http://www.dryeyezone.com/talk/forum...puter-bearable
I've watched this thing about meibomian probing recently, but I'm not sure if it's applicable to your case
https://www.youtube.com/watch?v=JbDH98i5gW8

This may not apply to you, since my pain may be nothing next to yours, but what I try to do is to live with the pain. While NOT abandoning the hope of getting rid of or at least alleviating it, I don't make it my enemy, but rather an unavoidable part of life. This approach does not lessen the pain, but it somehow helps to bear it better. It's difficult to master. I myself succumb to fits of melancholy at times. Our greatest enemy are negative thoughts. Allowing them into our minds and harbouring them ABSOLUTELY NEVER lead to anything good. It's way too early for you to leave. Hang in there.

[chenpachi]

Hi again everyone.

As an update, I am getting LipiFlow done this Thursday. I'm really anxious because LipiFlow and IPL are now the only two treatments that I haven't tried and if either doesn't work, I honestly don't know what to do anymore.

[DKott27]

I am right there with you. I have tried so many things. For me though all my glands are about gone. I have 2 left. I am doing probing in 3 weeks but there isn't much to probe. I am going to an acupuncturist tomorrow who specializes in the eye region. I am trying anything and everything. I understand the suicidal thoughts. I get them too. The thought of living with this the rest of my life is an unbearable thought. I can't do anything. I don't socialize. I don't go out. Conversation can be difficult. I'm unable to go back to school. I have no life because of this. It is awful. Some days I wish someone I know could have this for one day just so they can see how agonizing this is and understand how I feel.

[PhoenixEyes]

If you can't tolerate the scleral lenses it may be worth getting them refitted or trying a different fitting process (LaserFit, Eye Print Pro). The admin of this forum, Rebecca Petris, runs a active Facebook group regarding scleral lenses and it's worth asking there about advice regarding them (the admin says "the devil is in the details for sclerals"). I see people there who say it took more than 5 re-fits to get ones that they could wear all day comfortably. Or ones who started with PROSE lenses then changed to some other brand. There's also lots of discussions there about which cleaning solutions are less irritating, buffered versus unbuffered saline to fill the lens with, artificial tears to add to the saline etc. Some there have very sensitive eyes and can't tolerate the same drops / solutions / saline that others use. I've tried almost everything available to me and am pursuing scleral lenses next, I'm sure it's gonna take work but hopefully worth it in the long-run.

https://www.facebook.com/groups/1499817493657314/

[dede29]

Hi chenpachi,

Did you have any success with LipiFlow?

Best, dede

[sophie0416]

Hi chenpachi,

im just like you! We’re on this together. Every time I go to the doctor they all tell me I’m fine, my eye tests are always clear, glands perfect and eye looks normal; well then why do I feel like someone is using bleach on my eyes? Why do they burn? Why am I so sensitive to light?

They dont know, this doctors don’t know!

Finally today, I have a new doctor and she has dry eyes too, but she can wear makeup, so I’m getting a lot of tests done to see if she can help, I’m excited.

i hope everything went well with the lipiflow please let us know

[chenpachi]

Week 1 Update

Treatment

• LipiFlow performed exactly one week ago
• Given tacrolimus ointment to use every 12 hours on the eyelids
• Given TobraDex to use nightly for a week
• Given VitaPos ointment to use nightly as needed
• Continue to use warm compresses at least 4 times a week
• Use lubricant drops as needed

Post LipiFlow Updates

• First 8 hours after LipiFlow were great - my eyes felt normal and there was no pain at all
• After 8 hours, my eyes felt much dryer than normal for about 5 days
• About a week after treatment my eyes started to see some relief, mostly pain relief. They're still getting bloodshot as the day goes on but the pain is not as bad as it was before
• Normally in cold, dry weather, my eyes are unbearable but today they were very much bearable

Other Notes

• Pain seems to be a large component of my MGD because my doctor says my symptoms do not match my signs. Additionally, a lot of my dry eye discomfort goes away when I use advil or aleve for other issues like headaches.
• I'm allergic to almost every environmental allergen and my IgE levels are apparently in the 2000s. Going to see an allergist to see if decreasing my allergic response will help my MGD

[MGD1701]

Thanks for the update and great to know you now feel better.
AfterLipiFlow my pain was reduced about 65%. I do not have pain anymore for 7 months.

Drop: you dont need drop during the day?

Lid hygiene/massage: Do doctor recommend you do these? If yes, any specific brands?

What are the purpose for these?
*tacrolimus ointment to use every 12 hours on the eyelids
*TobraDex

Thanks again for sharing!

[chenpachi]

Drop: you dont need drop during the day?

I honestly forget to use lubricant drops all the time because they really only help me for a few minutes after instilling them. But, I use them as needed when I remember to.

Lid hygiene/massage: Do doctor recommend you do these? If yes, any specific brands?

Normal microwavable eye masks for warm compresses and avenova lid cleanser. The avenova is a bit pricey though and requires a prescription.

What are the purpose for these?
*tacrolimus ointment to use every 12 hours on the eyelids
*TobraDex

TobraDex is a steroid and antibiotic ointment that my doctor likes to give to everyone for a week after LipiFlow treatments. Tacrolimus ointment is for the allergic component of my MGD. My IgE (allergic antibody) levels are really high and my doctor's having me use it until an allergist can give me something more systemic to control my year-round allergies.

[MGD1701]

Thanks a lot for sharing.

Drop:
I think if drop does not give you relief, maybe it is WRONG drop. Which brand of drop you use?
Before LipiFlow my eyes were so dry that I had to apply ointment during the day (which was a bad idea especially I did not do compress nor lid hygiene - no doctors told me so).
My dr told me I should apply drops before eyes getting too dry - I believe when too dry, it could damage cornea. This is HOW I got terrible erosion.

Diet: Did dr recommend you take omega 3 or combined with GLA/omega 6? They are great for oil quality and reducing inflammation.

Inflammation: any idea of your source of inflammation?

Good luck again!

[Bodziu]

Hi chenpachi,

I give you score of 10 for trying so much stuff, beats me. Now down to the business, well nothing worked so thing about it, nothing is working, are you beating around the wrong bush, how to say. Chenpachi I don't have a fix for you just food for thought. Let's say an viral infection for instance (not eyes), you apply antibiotics, how is that gona work? There is a several possibilities. Applying the wrong treatment in this particular case is not wrong as it prevents secondary infection. Second thing, placebo effect is big one, works 1-2 days though and third, scenario progress of illness caused by the wrong meds. So what I'm saying here is trying is good and sometimes something not making sense may work. So I got one for you, works for me, 10-20 dollars risk. Buy hyuirulic acid masks. Also do not put any creams on your face unless it is chemical free with linolin. Creams go to your gland right away. A couple of years ago, what was working nice for me was vit c cream as a base and small amount of vit c added to create ph around 5, put on eyelids, don't ask me why, it did work, and again make sure no chemicals too much in there, if I can remember it was cream from swansonvitamins, (I'm not associated with them by any means and personally I experienced their international shipping, it is bad) and last thing, no soap on eyelids unless ph range 6-7 max, I had blep no any more, hahha but pain the same
regards
B,

[nori2015]

chenpachi how are you doing today?

[chenpachi]

Week 2 Update

Whoops, this is a few days late!

Medications

• TobraDex - finished the 1 week course
• Tacrolimus - still using approximately every 12 hours, although the ointment is really uncomfortable but not painful if it gets in the eyes
• VitaPos - this lubricating ointment actually gives me some overnight relief

Symptoms

• slightly worse than week 1 but better than the days immediately post lipiflow
• may be due to changing weather - it has gotten really cold where I live in the last week

Other Stuff

• seeing an allergist in a few days because my IgE level is extremely high