New, very dry, nothing's helping...

[SuzCat]

Hi,

I'm a 36 year old mother of 2 and for a couple of years now, my docs thought I had Sjogren's Syndrome, but are now calling it ME with Sicca. Whatever. It doesn't change the symptoms.

I had temporary ductal plugs put in my eyes last week, and the eye doctor said that if they're going to help, I'd feel it immediately. Well, I barely felt any difference. My eyes were still very dry and my eye-ointment still only helped for an hour or so. I had absolutely no tear overflow either, which scotched my theory that they were draining away too fast.

My Tear Break Up Time (TBUT) is less than a second. In normal eyes it's 8 seconds. From what I understand, this means that any tears I do have (not many, because my eyes are both 0 on the Shirmer's Test) evaporate instantaneously.

Tears need a mucin layer to make them stick to the surface of the eye. My foggy brain thinks it remembers reading that mucin in produced in goblet cells that are all over the surface of the eye. I'm thinking that my goblet cells (such a great name - I picture minuscule silver chalices that should be over-flowing with a kind of wine for the eyes) are not working.

I've read about meibomian gland problems, and the symptoms listed are blocked glands (dotted along the inner eyelid, where some women put eyeliner) and crusty deposits. I don't have that. I have nothing. All clean, bone dry, and sore.

I'm putting this out there to see if anyone can tell me what I should ask the eye doctor at my next appointment. He's not offering a heck of alot. If I'm not making mucin or meibomian oils, is there any point in trying Restasis?

Is there anything that can help with this problem, aside from constant eye-lubrication? It's getting to the point where I can use up a $10 tube of eye lube in 2 days.

Thanks,

SuzCat

[PotatoCakes]

Welcome to the board. It's a fantastic resource.

Restasis is worth a try. It helps approx 15% of people but you won't know if you're in that 15% if you don't try it.

It sounds like your problem is very similar to mine -- no mucin, no aqueous layer, no real cause / diagnosis. I've had my hormone levels, thyroid, Sjogren's, cancer and one or two more things tested, all pretty much resulting in no diagnosis but Sicca.

I'm currently on compounded Restasis (sensitive to the castor oil in commercially-produced), serum drops and copious amounts of fish/flax oil (Barlean's Omega Swirls keep me from feeling like a pill popper). I've not had luck with plugs although I believe I may end up cauterizing my lower ducts and re-trying plugs in the upper. Recently we tried a Medrol (steroid) pack to see if that might make an impact but I'm on day 6 and haven't noticed any improvement so it looks like whatever is wrong with me, it's not going to be impacted with steroids.

Did your physician put plugs in all 4 ducts or just the uppers or just lowers? If he just put 2 in, you may want to ask about having all 4 plugged.

[jads]

Would highly recommend getting your doctor to look at your hormone levels. Blood tests are ok although some practitioners prefer saliva testing now it seems.

Either way, you are looking for high to abnormally high estrogen levels and \ or a corresponding low progesterone or testosterone level.

Best

[Irina2]

Hello,

Yes, Restasis is very worth trying. It fights the inflammation that decreases your tear flow. The only drawback is that it takes time to take full effect. You will notice some difference in a month and it will take up to four to six months to experience significant increase in tear production.

You can also try Lacrisert. Ask your eye doctor if you are a candidate based on your eye exam. It's an insert od a size of a grain of rice which you insert under lower lids (between outer and middle thirds) and it provides ongoing tear release for you to keep your eyes moist. Ask your doctor for a free sample.

There are different brands of artificial tears and some people like one better than the other. Again, based on your eye exam, your doctor may suggest a different brand. Preservative free tears are the best since the preservative itself may contribute to eye discomfort and dryness. If the problem is deficiency of mucin from goblet cells, for instance, or deficiency in aqueous production, systane ultra or refresh liqugel may help. If the problem is with deficiency of oil production from meibomian glands, systane balance may help.

You can read more about our understanding of dry eye here:
http://www.GanelisMD.com/your-health/conditions/

I hope it helps.
Sincerely, Irina Ganelis, M.D.

http://www.GanelisMD.com

[SuzCat]

Hi PotatoCakes,

Thanks for your advice. I've also been tested for everything under the sun, and ended up with a diagnosis of sicca and ME/Chronic Fatigue. No cause, no cure. Such fun!
I think I've got an eye infection - my first in 15 years - which hasn't given me much faith in having plugs. But I'll check out the idea of 4. Hopefully this was a co-incidence and not a red-flag.
I need to up my intake of flax oil (I'm vegetarian, no fishy burps for me). I'll try those Omega Swirls you take. Good tip.

How did your eye doc ascertain the state of your mucin layer?

[SuzCat]

Hi Dr Ganelis,

Thank you so much for your reply. I've read about Lacriserts, but hadn't thought to ask my eye doc. I'm in Israel - maybe it's not available here. Is it prescription only?

Suzie

[SuzCat]

Hi Jamie,

I got my hormones tested a few months ago. Everything normal, but low DHEA because of my hypothyroidism. Doc didn't recommend taking a supplement, just tweaked my thyroxine dose. Hopefully that'll help.

Thanks for your advice,

Suzie

[PotatoCakes]

SuzCat - I'm not sure how they (I've had mult MDs tell me the same thing) figured it out exactly. I think when you apply a tiny bit (really tiny bit) of pressure on your eyelids near your lashes, normal people have some oil that appears -- I don't. Well, last time I was in, one of my eyes produced a super tiny amount but of course, not enough to make my eyes feel normal or even halfway normal. If you brush your upper lashes up with your finger and kind of hold it up so you see the pink / red part that touches your eye (not the inside but the lid part that closes together), normal people have oil that is produced. It's not a ton but it's enough that you can see it.

[magoo]

The mucin layer is the layer closest to the eye surface, I think it is produced by the eye surface itself. Then the aqueous layer, and on top, the lipid layer. Potatocakes, I think you are talking about the lipid (oil) layer and SuzCat was asking about the mucin layer.

[spmcc]

For diagrams and descriptions of mucin, aqueous, and lipid/oil layers, see:

http://www.dryeyezone.com/encyclopedia/mucinlayer.html

http://www.dryeyezone.com/encycloped...eouslayer.html

http://www.dryeyezone.com/encyclopedia/lipidlayer.html

You can also check out the whole dry eye encyclopedia here: http://www.dryeyezone.com/encyclopedia/index.html

[PotatoCakes]

magoo, yes, thank you for the correction. I was indeed talkign about the lipid (oil) layer!

[SuzCat]

Aha! So, PotatoCakes, I did that. Nada. Oil free. So is my hair. I wonder if it's connected. I was very sick for 2 weeks, couldn't wash my hair and it STILL wasn't remotely oily. 2 years ago it would have been disgusting.

Magoo, yes, the mucin layer is produced in goblet cells dotted over the eye surface. I'll have to ask my eye doc what he sees and demand info.

spmm - yeah, I need to look at those. My brain just isn't processing info at the moment. Too tired from stupid ME/CFS.

Thank you so much everyone!

[Rebecca Petris]

Magoo, yes, the mucin layer is produced in goblet cells dotted over the eye surface. I'll have to ask my eye doc what he sees and demand info.

SuzCat, just a practical tip - I think it is unlikely your doctor can tell you very much about the condition of your mucin layer and how it might be affecting your symptoms. Aqueous and lipid are easier and relatively routine to evaluate and we should all expect that of our doctors but mucin is rather a different ballgame. Even if there were routine tests for this that weren't too invasive, they might be of limited practical usefulness since I don't think we really have much in the way of treatments for inadequate mucin at this time.

It used to be rather vogue for drug companies to claim increased goblet cell density as a benefit of their drop... I don't seem to be hearing that as much lately.

[mgshutterbug]

SuzCat, hang in there! Do you ever use warm compresses? I find moist, warm compresses (rice baggy in plastic bag on top of very warm wet washcloth over eye. I don't know that the warm moist heat actually opens the meibomian glands, but for me, it does help my eyes to feel better. I use Muro eyedrops x4/day, Muro ointment at nite, and saline drops in between as needed. I wear moisture chamber glasses all day every day. If my eyes are open, I have them on. I've used Panoptx, 7eye eyeglass frames. Hope you get some relief soon. The Muro drops and ointment are specifically for those who have EBMD, epithelial basement membrane dystrophy, a corneal disease. They are not for anyone who has dry eyes.
Maria

[SuzCat]

Well, I guess I'm hanging on for those Oasis drops to be back in stock, Rebecca! It sounds like the only thing to replicate the aqueous and lipid deficiencies that I no doubt have. I'll forget about mucin then, but I still love the image I have of my goblet cells as over-flowing chalices run dry.

Shutterbug, I do use warm compresses, but cold ones are more soothing most of the time. I'm looking into moisture chamber glasses and a humidifier to save my eyes from the air-con that I need on most of the year. I've got prescription swimming goggles that I put on the other day to see how my eyes would feel when shielded from the environment. They felt GOOD!