Glad to be newbie, but need your tips on MGD

[NCRedhead]

I have read most of the posts for past few months, but was recently diagnosed with obstructive MGD and find that I have a few questions that I have not been able to track down. I appreciate any guidance you all have.

Quick background: Was first diagnosed with EBMD about 4 years ago (they could see the dot mapping & cysts), but had little help treating it until a new doc realized that it was being aggravating by obstructive MGD. Once I was treated for this, no more eye erosions this year...woo-hoo! . However, so far, only Tobradex has kept this under control and I obviously cannot take it for a long period. As soon as I stop taking it, the bloodshot eyes, red eyelids and dryness come back. Mornings and inside corners of eyes are the worst. Unpreserved drops and warm compresses/massages help the most (thank you all for techniques on that), but do not keep it under control.

One big problem I have is that I seem to be overly sensitive or unresponsive to alot of the usual treatments, as others have reported, including:
*Antibiotic ointments or eye drops without steroids (especially ointments, so not sure if it is the antibiotic or the mineral oil/petroleum in the ointments)
*Commercial lid scrubs and most natural ones, but diluted baby shampoo on a Qtip helps a bit
*Anything containing castor oil (even applied externally to lids) or with carboxymethylcellulose (GenTeal, etc.).
*Most things with preservatives
*Any oily drops or eye cleansers in general
*Anything with antihistimines or decongestants for allergies, except Mucinex D seems to be somewhat helpful.

I do have some questions related to postings and other research I've read...any insights appreciated!

1. Are there some foods that definitely seem to make this worse for most folks or does it just vary too widely?
2. One recent researcher noted that folks with MGD should avoid any night-time ointments or thick drops, but did not get into why. I do notice that these give me the reddest eyes om the morning (unless it's Tobradex), but is this true for others? If so, what have you all found to be good options for lubrication at night?
3. A recent post talked about the fact that regular lid scrubs may not be effective and can make things worse. Is that true for other MGD folks or no?
4. Does the fact that I only seem to respond to steriods indicate anything important?
5. I have not yet taken doxy pills, so that is next step for sure, but wonder if this works as well for obstructive MGD as other types?
6. Are there any good ways to know if allergies may be a major factor to problem? I am headed to an allergist next week, but wondered if there are some signs other than my problem is worse during certain times of the year.
7. Anything else I should investigate?

Sorry this is SO long...newbie for sure.

[Gretchen]

Welcome

Hi,

Glad that you finally decided to post. There are many folks here with MGD and/or allergies, so you have found the right place. I have ocular rosacea which results in MGD. From what I understand, most cases of MGD are related to rosacea. I presented with ocular first and then got diagnosed with facial rosacea. However, my derm said that I have the mildest cast of facial that he has ever treated. According to my Dr (as well as Dr Latkany) there is rarely a correlation between severity of ocular and facial rosacea. I will try to answer your questions from what I have found.

1. Are there some foods that definitely seem to make this worse for most folks or does it just vary too widely?

If you do have rosacea, many folks have food triggers esp. spicy or acidic food that give them flare-ups. I would recommend keeping a diary to see if you can pinpoint any. Some folks have reported reactions to tomatoes, alcohol, etc.

2. One recent researcher noted that folks with MGD should avoid any night-time ointments or thick drops, but did not get into why. I do notice that these give me the reddest eyes om the morning (unless it's Tobradex), but is this true for others? If so, what have you all found to be good options for lubrication at night?

I do not find a lot of help in either artificial tears or ointments (blasphemy I know!) so I can't really speak to this. I sometimes keep theratears on hand as they seem to be the most neutral, although I can't really say that they "work" for me. Other stuff just makes my eyes weird.

3. A recent post talked about the fact that regular lid scrubs may not be effective and can make things worse. Is that true for other MGD folks or no?

I have found this to be true to a certain degree. Soap and Theralid scrub wrecked my eyes the morning after I used them. Through trial and error, I found that Ocusoft Plus pads work the best for me, but I use them and then rinse. I don't do the "leave-on" technique. They have reduced my eyelash scurf and I have had my eyelashes come back much thicker and healthier since starting to use them. They also take off my eye make-up.

4. Does the fact that I only seem to respond to steriods indicate anything important?

This means that you have inflammation. I have heard anecdotally that often folks who respond well to steroids in the short term could be good candidates for cyclosporine (Restasis). I know that you mention that you cannot manage castor oil so the Allergan formula - Restasis will not work for you. There are compounding pharmacies that can compound cyclosporine in a friendlier medium. Leiter's is the most well known and they ship. You just need a doctor that will call it in.

As for steroids, there are "lighter" steroids like Lotemax and Alrex that are safer for longer term use. You may want to talk to your Dr about these.

5. I have not yet taken doxy pills, so that is next step for sure, but wonder if this works as well for obstructive MGD as other types?

I and many on here have found Doxy to be very helpful. I has gotten me very far. The mechanism is not precisely known, but in general it is an anti-inflammatory.

6. Are there any good ways to know if allergies may be a major factor to problem? I am headed to an allergist next week, but wondered if there are some signs other than my problem is worse during certain times of the year.

Allergies can be a big problem for people with MGD. I do not know that much about allergies but there are many folks on the board that do. Intradermal skin testing is what is generally done and then folks get shots which take some time for full effect. Avoid perfumes and chemicals at the very least. For now until you know what/if you are allergic, request that your Dr give you a sample of Pataday to see if it helps.

7. Anything else I should investigate?

Doxy, compounded cyclosporine, get a lighter steroid for longer term use, try Pataday, warm compresses 1 x day, 4000 mg fish oil (I use Nordic Naturals liquid) 1x day

On the more exotic side, there is a lot going on for use MGD'ers. Check out Autumnn's post on IPL with Dr Toyos, there is some excitement over probiotics used for VKC and its' potential use for ocular rosacea and there is a trial going on at Mass Eye and Ear for MGD. Even if you do not participate in the trial, they will treat you with the med if you go to Boston for the initial and follow-up. Some of this stuff is pretty experimental, but it should give you hope that there is some stuff going on.

I wish you luck. I think that with a good Dr and some time and meds, you will be surprised how much you can heal.

Best,
Gretchen

[NCRedhead]

Gretchen....thank you so much

These are all great things to pursue. I am printing off your responses and taking them to eye doctor. Does anyone know of a good MGD specialist anywhere near North Carolina? If not, then I am willing to fly to the best...who would that be?

I am going to a dermatologist next week too as well as allergist so will pursue the rosacea for sure. I did 20 minute warm compresses last night and then masssage....and just don't see evidence of any oils coming out when I press the glands and eyes worse today. So, I am going to try the warm steam. Someone had suggested to do a pot of really hot water and then put your face over it with eyes closed for about 15 minutes, so will give that a go but won't stay too close!

So glad to be at last in a supportive community.

[Gretchen]

Warm compresses can sometimes aggravate...

Redhead,

Yes, sometimes compresses can irritate your eyes. For folks like this, Dr Latkany recommends just "steaming" the eyes in the shower, and then do the lid massage and qtip thing when you get out (if you need a demo of this, he has it in his book)

I also did not mention Azasite. Some folks on here have been cured by it (search for a long thread that SkyGoddess did a while back). For me, it did nothing. But all this stuff is trial and error. You will see that two folks on here with the exact same diagnosis will respond to totally different protocols. Which is what makes this whole thing very difficult and makes a good doctor important.

As for doctors, if you want the best - Dr Latkany in NYC is the guy. If you want really, really good and closer, Dr Foulks in Louisville. Those are the 2 that I know in your general vicinity. Hopefully someone will chime in with someone great closer to you. Good dry eye docs are very hard to come by. I live in downtown SF with a doctor at every turn and I still drive 1 hour to see my guy.

Regards,
Gretchen

[NCRedhead]

Thanks Gretchen...making some progress

The OcuSoft Pro scrub pads you recommended are working better than the other stuff, but I also wash the stuff off like you do. I met with dermatologist today and she says that I do have some roscea on my face (just a tad), but some evidence of it and probably allergies in the eyes/eyelids. So she agreed to start me on doxy to see how that goes and took first one tonite. She also suggested avoiding most dairy, especially cheeses, as that thickens mucus and oils. I'll give it a try..what the heck. I see an allergist on Friday...so making the rounds!
I am going to try to the hot steam thing tonight. I have noticed that my eyes also are usually better after I exercise on eliptical for at least a while, so that must get something moving.

[Rebecca Petris]

re: NC doc

If you want a really good lid disease evaluation I'd go see Sandra Brown in Concord. (Yeah I know it's a long drive. She's worth it though. I wish she were within driving distance of me ) Use code word "fish" when booking though as she normally only sees kids.

[NCRedhead]

Thanks Rebecca...that's closer than NYC!

It is only about 2 hours from me so not too bad. I did find her on your directory, but not until after I asked about doctors. FreshKote is helping a bit, so wanted you to know that. It's amazing what works for some, does not for others because it appears we have so many different underlying issues, sensitivities, etc.