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Old 10-12-2003, 08:54 PM   #1
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missmolly89 HB User
Unhappy MGD and Ocular Rosacea

I have been diagnosed with Meibomian Gland Dysfunction as well as Ocular Rosacea. I was given Minocycline at 100mg daily and Blepharide ointment. I have been on this for a little over a month with no improvement. I know that these things take time to work but I would think that I would at least have slight improvement. I think things have gotten worse. My upper eyelids are both so swollen that it looks like I haven't slept in weeks. I have constant red eyes, especially in the corners and lid margins. Plus I have blood vessels all over my eyeball, but really bad on the top of the eyeball. I constantly have headaches from the swelling in my eyes. I don't know, but I would say that even my eyeballs are swollen.

I just need some support and suggestions. I just don't think that I can spend the rest of my life like this. Surely there has to be something that can be done in order to have normal eyes again.

By the way it has taken me 3 different doctors to get this diagnosis. The last one told me to do the lid scrubs ( never explained how), gave me the meds and out the door he went.

If anyone out there can help, I sure would appreciate it!

 
Old 10-13-2003, 12:00 AM   #2
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Hi missmolly - I think I responded to one of your earlier posts about chronic bloodshot eyes. I had this problem too, and I have also been diagnosed with MGD and ocular rosacea. I just wanted you to know that you can and will get your symptoms under control. BUT you have to be very diligent about doing the warm compresses and the lid massages in order to keep the meibomian glands functioning properly. Did your doctor explain this to you? If not, let me know and I'll try to help you with the details.

I think that's good your doctor started you on a cycline derivative. I have been using doxycycline for two months now (100 mg/day) and have experienced dramatic results. It has really helped to reduce the amount of redness I had in my conjunctivae (they're actually starting to look white again!). You just have to be patient for it to kick in and start working (maybe one month?). As for the Blephamide, I would just be extremely careful with this drug - it is a steroid and can affect intraocular pressure. PLEASE stop taking it immediately if you have any pain because it can permanently damage your cornea and/or optic nerve. This is what almost happened to me. Thank goodness I stopped taking it in time!

I think the most important things to do if you have this disease, as I mentioned earlier, are the warm compresses and lid massages (at least 4x/day). You should also drink tons of water throughout the day and maybe try some of those eye nutrition supplements. I take a couple of those TheraTears Nutrition pills every morning and night. But if you decide to use these supplements, DON'T take them within two hours of having taken your minocyclene - I think there may be some absorption issues. Another thing I do is use a prescription medication called MetroCream. My ophthalmologist told me to put it on my nose, cheeks and forehead once a day. This cream is usually for people who have the facial form of rosacea (which I don't have), but my doctor says it is of some benefit to the ocular form because it helps reduce inflammation somehow (not exactly clear on this). And finally, NEVER use any eye drop that has vasoconstrictors (drops that "get the red out") - this will only make your condition much worse!!

Also, are you experiencing any dry eye symptoms? The warm compresses and lid massages should really help with this. And you should use an artificial tear that is preservative-free (you probably already know all of this).

I hope you start to experience some relief soon. If it's any consolation, I've been there and I know what you're going through. It took me months to figure out what was happening to me - the first ophthalmologist I went to could never give me an answer, and I suffered greatly. I am so happy I'm seeing this new doctor now. He has helped me a lot and seems genuinely concerned about seeing me get better. I hope you find a doctor like this, too. Please be patient - there is hope that you will get your symptoms under control.


 
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Old 10-13-2003, 08:54 AM   #3
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I am going to ask my eye doc about metro cream. How does it work on the eyes, though? Do you think I should switch from Mino to Doxycycline?

Can you tell me how to do lid massages? Also, I do use Visine daily because I would never be able to leave the house with the redness of my eyes.

 
Old 10-13-2003, 01:26 PM   #4
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The feeling of pressure in your eyes concerns me. You should go back to the doctor and get that checked. Does the ointment you are using have any steroids in it?

Also, I hate to say it but I think the Visine is the problem. It has a rebound affect. It gets rid of the redness for a short time, but then it comes back with avengance. Also, the preservative in it could be irritating your eyes. It's a very harsh drop, and not really good for the eyes no matter what the package says.

 
Old 10-13-2003, 02:57 PM   #5
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Hi - I'm not sure if Doxy is any better than Mino in the long run. They may have different side effects - I'm not sure. As far as Doxy and Tetracycline, I know that Tetracycline is supposed to produce results faster initially, but they kind of even out around 6 months. And there are supposed to be less side effects with Doxy. I haven't experienced any side effects on this drug so far and it has the added benefit of making my skin softer and smoother. I think all the cycline-derived drugs work in the same way for blepharitis (meibomitis) - they're not really used for their antibiotic properties, but rather for their anti-inflammatory effects. So I guess if you're not experiencing any side effects from the Mino, maybe you might want to stay on it a little longer(?). If you haven't noticed any improvement at all, though, it may be time to try something else.

I think the absolute key things for you to do right now are the lid massages and warm compresses (I don't do the lid scrubs anymore because they just caused further irritation to my eyes). Doing these two things has helped me 10x more than any drug I've been put on -I'm not kidding you. I got rid of every single symptom of meibomitis, except the red eyes, doing just these two simple things at least 4x/day (my red eyes started to clear up more once I started the Doxycycline). Compresses and massages are absolutely essential for you to get your symptoms under control (have I made my point?). I'll explain how to do these in a little bit.

Another thing that I think would benefit you a lot is to wean yourself off of the Visine - I know it's hard to face the public with red eyes, but these drops are only doing you more harm than good in the long run. You may have noticed that when the Visine wears off, your eyes are redder than they were when you first put them in (this is called the "rebound effect"). Over time, the blood vessels in your eyes become permanently damaged as they lose their elasticity. Then they remain red and engorged with blood because they have completely lost their ability to constrict. As I said, I know how difficult it is to have red, bloodshot eyes - I'm sure people must have thought I was high on pot all the time! But you really don't want your eyes to become dependent on these drops. Just give them some time to clear up on their own, and try not to worry too much about what other people think (I know this is really difficult, though!).

I would definitely ask your ophthalmologist about the MetroCream. You should also ask him if he supects you have the facial form of rosacea, too, and whether or not you should consult a dermatologist. My ophthalmologist doesn't seem to think I have the facial form, though, so I never went to see a dermatologist.

As for the lid massages and warm compresses, try to do these at least 4x/day, definitely in the morning when you wake up and at night right before you go to bed. This will help to unclog the meibomian glands and get them functioning properly. For warm compresses, I would put a couple pieces of those cotton makeup removers under warm water then place them over my eyes. I would leave them on my eyes for about 10 minutes and just rewarm them under the water if they got too cool. While having the cotton on my eyes, I would gently massage the lids by pressing down on them and rubbing them. This helps to push out all of the clogged oil of the meibomian glands that line the inner rim of each eyelid (you can see these glands if you pull your lower eyelid out a little bit). After the compress, I would take my index figure and GENTLY push my eyelid against my eyeball to squeeze out any remaining oil. My ophthalmologist taught me how to do this and it works REALLY well - maybe you can ask your doctor about this next time you see him/her. I hope I explained this oaky - let me know if this explanation was too confusing. I should mention that the warm compresses/lid massages may seem irritating at first, but you will start to notice their benefits within a couple weeks.

Okay, keep in touch and let me know how you're doing. Stay hopeful and patient - this disease is tough to get under control and it takes a long time to get to a point where you're not experiencing any symptoms anymore. Believe me - I know. My doctor told me that the healing process was really slow, but he kept reassuring me that things would eventually get better. It's not like having a sore throat where once you start taking the medicine you feel well again in a couple of days. With this disease it takes weeks to notice just the slightest, tiniest bit of improvement. Honestly, with some extra effort on your part, it will get better. But don't expect the drugs to do it all for you!


 
Old 10-13-2003, 06:14 PM   #6
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Do some research online on doxycycline and tetracycline for MGD/blepharitis. I've read from several sources that doxy should be taken at 100mg/day, while tetracycline's (such as minocycline) should be taken at a higher dosage.

Not to make you feel any worse about this, but to give you an idea of how long it will take to get through this, I've been dealing with this since January. It's probably not quite as bad as it was in January, but I've noticed no improvement for months now. Then again, I've yet to go on doxycycline.

As for the Visine, well...I know how you feel. I've broken down and used it a few times, but I try and stay away from it. I don't know what to tell you about the redness. I'm dealing with the same problem.

Oh, and it took me three doctors to get this diagnosis as well.

 
Old 01-18-2005, 04:27 PM   #7
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Wink Re: MGD and Ocular Rosacea

hello, I am 22 and I live in New Zealand. this is my first forum posting. I decided to post this information because I consider it important, and could be beneficial to others, and I could learn from others too.
late 2003 i found that my eyes seemed to look red all the time, so i would often use Visine.
in April 2004 i went to see an eye specialist. He said I had blepharitis, and that if I really had to use the visine, use it no more than 3 days apart (Some days I had used it twice a day). Ive only used it once or twice since then, because it leaves visible blood vessels on my eyes. The vessels are still there to this day, but I hope they'll go away in the future.
I'm guessing that my meibomian glands got dried out from the roaccutane i was on back in 2001. The last time I was able to cry tears was in 2002 (when i failed my full drivers licence). Since then I havent been able to cry tears. I wonder if I'll be able to again in the future with the right treatment.
my doctor also told me that I had dry eye, and "irreversible UV radiation damage where my eyes have yellow patches". I'm not able to see the yellowness myself. He was using a telescope. I'm guessing that this could be from using CRT computer screens, since they radiate UV rays, don't they? I wonder if getting a flat lcd screen would take away any eyestrain, or one of those anti-glare screen filters for my CRT.
Since September ive been using TheraTears Nutrition. People have commented my eyes look more moist, and reflect light better now, but the redness is still there. I really don't know if its worth my while since I'm ordering them off the net from Arizona, but I will keep on them for now.
In November, I started using minocycline once a day (I'd used it before for 1 month but Ive since read it can take 3 or more months to work, so Ive gone back on it).
and since late december, Ive also been using refresh liquigel in the morning and night(i know its got the preservative Purite in it, but I like it being in a bottle). Ive often wondered if allergan endura eyedrops would be better, since it builds up the mucin (?) layer, I believe.
Ive never really experienced any pain or discomfort with my eyes. Ive never noticed red eye lids. Its only the redness in the eyes that really upsets me. I hope that in time, my conjuctivas will get whiter, and the dilated blood vessels will reduce substantially.
my appearance means a lot to me. Its where I get my confidence from.
In November, I saw a new eye specialist because I didnt want to wait a few weeks for the other doctor. This doctor told me to never mind the lid scrubs, or warm compresses (using warm potatoes to secrete the irritating sebum, which i had been doing). He said there was a new technique that had been found. You run your index fingers across your closed eyes quite hard across the eye lids from the nose side to the other side.then do the same with a warm damp cloth. The first wipe is to dislodge the debris from the lids. The second wipe is clean them off. I have never been able to see any benefit from any type of compress or lid scub. My doctor never told me to still clean my eyelids with a warm flannel but I do so anyway, just in case.
quite often i go to meetings. they have air conditioning there and fluorescent lights. My eyes are very red afterwards, but I hope in time with my treatment, they wont get red. They also get red from saltwater when I go for a swim.
Heres some good news though, in the last month, Ive noticed that my redness goes away quicker now after I leave the meetings or saltwater. maybe the quality of my tears is improving, and/or the quantity.
So 2004 was a very down year for me because of the eye redness, I didn't feel comfortable around anyone. But I hope the redness will get better in the coming months. I will post again if I have any good experiences, that might help someone.

 
Old 01-21-2005, 07:40 AM   #8
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calibug HB User
Re: MGD and Ocular Rosacea

Miss Molly,

Sorry to hear about your eye troubles. I have the same thing. Jen gave you great advice. I know someone who got this under control by just cleaning her lids with baby shampoo mixed with water. Everyone needs to see what helps their eyes and what aggravates their situation. I really notice the difference when I clean them. The oil burns my eyes. My doc refers to it as the "bad" oil. I do the cleaning and warm compresses. I also try to carefully massage in the evenings. I take doxy and have been for months now and also I am on Restasis which not only helps dry eyes, but appears to have some component to it that helps with this stuff.

Please please please don't use Visine. It actually will make your eyes redder! Don't play around with that stuff. Some good eyedrops are Systane, Refresh Plus, Thera Tears and they need to be in the VIAL form. The reasons they are in the vials is that there are no perservatives in them. Apparently you can use Thera Tears in the bottle form though because the perservatives disappear on eye contact. Be really careful what you put into your eyes!!

Hang in there. I think it can take a long time to get this stuff under control. It won't happen over night. I guess patience is the key for all of us. Definitely find out if you are developing Rosacea. The eye symptoms can proceed the skin and that is what happened to me although my skin is barely affected. I mainly have the eye symptoms. Apparently by getting the skin under control, you can get some relief from the eye symptoms.

Hang in there!!
Calibug

 
Old 01-21-2005, 07:49 AM   #9
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calibug HB User
Re: MGD and Ocular Rosacea

Sleek, just read your message. Sorry to hear about your troubles. My eyes aren't really red but my eyelids are. I have blepharitis too. Strange how we can have the same thing but different symptoms.

Do your eyes burn a lot or is your main complaint the eye redness? My eyes burn a lot but I can also tear very easily. My eyes just pour tears when I cry. I've really notice it now that I am on Restasis. Maybe I just didn't notice it before but I really do feel the Restasis has improved my tears drastically.

You may want to give Restasis a try. The Refresh Endura is suppose to help the oil layer of the tears as well. I believe it may be from the castor oil which is also in Restasis too I think. You may want to give it a try.

I think I am going to try your massage technique. I am surprised he doesn't have you cleaning your lids though. Guess I'll find out more when I go back to my doc.

Hang in there and good thing you stopped the Visine. That stuff may have contributed to your redness and it may take awhile for the eyes to adjust back. You may be experiencing that now. Good thing you stopped!

 
Old 01-22-2005, 08:53 PM   #10
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sleek822 HB User
Wink Re: MGD and Ocular Rosacea

yeah, calibug, main problem is the redness
if my eyes do burn, i can hardly feel it and thus it doesnt bother me.
will consider restasis, thanks, and i will try endura after the refresh liquigel.
when my dr demonstrated on me the compress he did it very hard. felt like an eye gouge. I asked him, "its not gonna damage them, doing that, is it?" and he said it would take a lot more than that to damage them. So just make sure you do them hard, calibug. The instruction sheet I got given said that there should be some discomfort.
yeah i havent been using visine for about 9 months now, so I'm hoping that my eyes will adjust back fully with time. I'm not too worried how long it takes, just as long as its possible
take care.

 
Old 01-24-2005, 09:36 AM   #11
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Re: MGD and Ocular Rosacea

Hi you guys!
I am 36 and have had ocular rosacea symptoms and MGD for about 10 months. I have posted a lot over on the "Dry Eyes..help" thread. In 10 months I have seen some progress. I am on doxy now. What I wanted to ask you people with similar situations is this......do you have a slightly swollen upper lid and is your lid (right where the eyelashes come out) slightly hard and rigid? Mine feel this way and I always try to do a lid massage at that spot because I keep thinking maybe the glands are clogged or swollen or something. They are slightly sore in this region? Does anyone experience this? This lid massage that you talk about (the one that is firm and uncomfortable to do) is this supposed to be directed to this area of the eyelid?

Amy

 
Old 01-24-2005, 07:38 PM   #12
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calibug HB User
Re: MGD and Ocular Rosacea

Is your upper eyelid skin stretched too, Amy? Mine are a bit swollen where the eyelashes are and it looks like the skin is pulled tight. I can squeeze whitish fluid from my meibomian glands though. You should look just on the ridge underneath and see if there are any white dots. I warm them up and then massage them and sometimes I can get some white gunk out.

 
Old 01-30-2005, 11:55 AM   #13
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Re: MGD and Ocular Rosacea

Hey Calibug-
I'll write more when I have a bit more time, but thought I'd reply here. No, I have never been able to see any white dots under the ridge of my eyelashes. EVER. They seem hard though. When I massage nothing comes out that I can see. Is it possible they glands are irritated but not blocked? My Dr didn't think I had a lack of oil problem either. I don't know what the heck is wrong with my eyes. Just so painfully dry. They have been burning and dry for 1 week. Every time this happens, I get down and think it is going to be forever this time and I will not recover and am doomed. I hate that I think that way. Very negative about this stuff.
I tried to find the Soothe at Walgreens yesterday, but they never had heard of it. Odd. Oh well. Let me know if you try it and like it. It may be similar to the Endura. By the way, that seems to burn my eyes much like the Restasis (same make-up) initially and then about 20 minutes later- it feels much better. Perhaps I should return to Restasis. I'll check with Dr on 2/15 at next appt. When is yours?

Amy

 
Old 02-09-2005, 02:42 AM   #14
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Re: MGD and Ocular Rosacea

I suffer from meibomitis too, and doxycycline made a real improvement for me but after 2 months the doc has taken me off it, and my eyes quickly return to there previous state. I wondered if you knew weather people are able to stay on this drug for longer periods of time and what side-effects there might be.

Last edited by aah9; 02-09-2005 at 02:46 AM.

 
Old 02-09-2005, 05:07 PM   #15
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calibug HB User
Re: MGD and Ocular Rosacea

Did he stop the doxy cold after two months? You really should have been weaned off of it, I think. Usually lowering the dose (like 100 mg to 50 mg)and then maybe alternating days you take the doxy. Funny it was for only two months. I think you have to stay on the stuff for at least 3 months, or so I've read.

Might do you some good to get a second opinion. Some people have to stay on the doxy for very long periods. One previous doc told me that I could take a low dose of doxy continually...although I don't know if I would want to do that.

Good Luck!

 
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