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Old 09-15-2005, 07:53 PM   #1
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Update - MGD/Ocular Rosacea/Bleph

Hi - it has been a long time since I've checked these boards and I have yet again forgotten my old password/login! Anyway - it's me Jen. I promised I would keep in touch and provide an update on my "condition", although I'm not exactly sure now what my "condition" is/was. I've been off medication (doxycycline) now for almost 8 months and am happy to say that none of the bleph/MGD symptoms have returned. It's like whatever I had just burned itself out. It's really strange - like I never had any eye problems at all. My ophth. originally thought I might have rosacea, but I don't have any signs of it yet on my face, so maybe that's not what I have? I'm just really confused. Maybe what I had was just plain old blepharitis and it's not associated with rosacea? I guess I might just be a little worried because I have read that rosacea gets progressively worse if the proper medication isn't taken on a regular basis. But I would hate to be taking drugs for a disease I might not actually have. Does anyone else have experience with this or any good advice? Thanks.

 
Old 09-16-2005, 01:41 PM   #2
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Re: Update - MGD/Ocular Rosacea/Bleph

Hi Jen. How long did you have the MGD? I was diagnosed in June - have been doing the warm compresses and eyelid massages, but not as often as they made my eyelids bright red & flaky. I saw a dermatologist who said I have seb. dermatitis as well, so he gave me presecription creme to put on - it made my eyelids so much better - I took for 10 days, then back to puffiness and redness, so he has me back on the creme. My ophamologist was really no help - he just said do the eyelid massages and compresses if I want to. I find if I don't do them every few days or so, the puffiness comes back. I know its a chronic condition, but wondering if it will ever go away.

 
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Old 09-19-2005, 12:20 PM   #3
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Re: Update - MGD/Ocular Rosacea/Bleph

hello jen. I have been diagnosed with mgd and blepharitis and had a couple questions for you and or anyone. What were the symptoms that bothered you the most I seem to have alot of eye pain and redness on the lids as well as burning. I dident know what others had to say about this condition. I have been reading on here and looking to see what everyone has to say and I think you had bad symptoms if I remeber right. I feel like I cant see right and dident know if anyone else had this same feeling ive been daeling with this for 9 months now and am worried its not going to get any better but the dr says I can clear it up with the meds and the warm compresses I just need to know from anyone if this is try and what they went through. I am taking oral doxy and warm compresses I have been for 3 months and still not feeling better yet so im looking for some encouragement. Thanks to you jen and anyone that might reply. I am also young in my 20s so I hope that this makes it easier to recover from this.

 
Old 09-20-2005, 03:58 AM   #4
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Re: Update - MGD/Ocular Rosacea/Bleph

look at the earlier posts about mgd and ocular roseacea. me, jen, and a lot of others have posted their experiences. i got it when i was 17. now i'm 21 and i am just starting to get better (but i wasn't diagnosed until like a year ago). don't give up. u'll do it but u really really have to be persistent. good luck!

 
Old 09-20-2005, 05:15 AM   #5
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Re: Update - MGD/Ocular Rosacea/Bleph

What was it that helped you the most? was it the warm compressess or the antibiotics? I dont mind taking the time out of my life to make it better I just want to start to get better I was daignosed about a year ago and I am just hoping soon I will see improvement. What are the symptoms of ocular roseacea. I have read through alot of the old posts I have been following this board since this started. I still dont understand alot of the condition my eye dr is ok and says im going to get back to feeling 100 percent I am just going to have to work hard at it. I dont mind working hard at it I just dont know what caused the mgd and they said I dident have ocular roseacea so im hoping that that makes it easier to get better but I will keep on trying. Thank you for your reply ladymoon I did see earlier that you seemed to have alot of symptoms also. So hearing that you and jen are doing alot better makes me feel better thank you.

 
Old 09-20-2005, 06:56 PM   #6
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Re: Update - MGD/Ocular Rosacea/Bleph

Hey Jen,

Glad things are going well for you. I know what you mean about taking medications that you don't need. I started having eye problems well before the facial stuff and even now I really don't have any facial problems to speak of. I started blushing easily and the docs said that is was rosacea and the eyes were a dead give away.

I think posterior blepharitis is usually seen in people that have seb. derm or rosacea. You may only have it in the eyes and may never have the facial symptoms or at least have a very mild case of it. I use Noritate once a day because I believe rosacea is causing my eye symptoms but my skin would never tell you that I had it.

I don't really blush easily anymore but my skin is very dry. Beyond that it is mainly an eye thing for me. My face does get flushed if I exercise a lot but that is pretty common for most I guess.

You'll have to decide about using the creams or not, but one thing you may want to do is to watch triggers. Sun is a huge one. Alcohol, spicy foods and stress can also be problems. I personally use the cream though since I really don't want to end up with facial problems. I take really good care of my skin now and always protect it well from the sun.

My eyes are not 100 percent normal but a lot more under control with the antibiotics that I take. They seem to be progressively getting better. I think the key is long term maintenance. Do you still diligently clean your eyelids??

Good luck!

 
Old 09-21-2005, 12:08 AM   #7
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Re: Update - MGD/Ocular Rosacea/Bleph

Hey Mike,
Here's what i posted before. it lists all my symptoms and my treatment regimen. pls let me know if u have any questions after u read it and i'll gladly answer them:
my symtpoms began w/ just the swelling/puffiness too. i had some stinging or burning once in a while, but it wasn't much. i know how u feel, but imagine how bad it was for me at 17!!! u were there, u know how teens are still going thru changes...it was such a blow to my self esteem, i was soooo depressed. even now at 21, i still wanna look good u know? i was really very happy w/ the way i looked, not to be vain, so it was really hard. anyways, to answer ur question, about a year ago my eyes started acting up real bad, w/ the stinging and burning. it might also have been b/c i was on accutane, which can dry up ur eyes. so i went to another opth and he finally told me i had blepharitis, meibomitis to be specific. so i began my treatment. at first the warm compresses were really really iritating my eyes. but after about a week it got a lot better, but not great. well, i kept on warm compresses, about 10 minutes each, twice a day for about a year. my symptoms were stable but not gone, but maybe cause i wasn't clean w/ my lids; i still were eye makeup and contacts all the time. but i think w/ meibomitis makeup isn't as much a factor than w/ like anterior bleph. anyways, i finally decided to take a break from college to take care of the problem, and about two months ago i started a RIGOROUS treatment. i also started doxycycline. i'm not completely better, but i do believe its improving. i feel like its getting better and not just status quo like how it used to be. my lids are still puffy w/ undereye bags, but i think its been better. the swelling changes daily, but i never had it as bad as before. so i really believe and pray that it is finally on its path to recovery. i know it will still take a while, but hopefully i can become symptom free soon. let me tell you what my treatment consists of:
1) warm compresses for about 10 min each, 4-5 times a day
2) lid massages after the compresses. its hard to describe and there are many ways to do it, but basically i press down on the edge of my lids where the meibomian glands are to express the oil, top and bottom lid. i also slide my finger across the edge- i think it may help.
3) lid scrub after massage: dip a q-tip into a mixture of water and johnson's baby shampoo (about a 10:1 ratio - more water) and scrub my lids (where the lashes are) w/ it. some people find this irritating so its up to u. i personally believe w/ meibomitis this part may not be THAT crucial, unlike anterior bleph, but it prob helps.
4) before bed i do my last warm compress. after that instead of the conventional massage i "squeeze" out the oil. its actually my own "invention" and i haven't heard anyone do it before, but i think it really helps get teh oil out. what i do is I squeeze out the oil in the meibomian glands w/ my fingers. u gotta find what works for u most, but i hold it between my index finger of one hand and press down on it w/ the index of another for top and bottom lids. i can really see the oil come out. i have never confirmed this w/ my opthm, but i really doubt it would hurt the glans. really not sure though. i think it has helped.
5) before bed, i apply erythomycin ointiment onto my lids. this is usually for bleph, but the corner of my left lid is kinda sore so i think it helps.
6)doxycline (w/ a bit of food so it doesnt irritate my stomach) once a day (100 mg). my doc started off w/ twice a day for a month, and then once a day.
i honestly feel that it is slowly getting better. i haven't had a really bad "flareup" for a while (knock on wood). so i think this intensive treatment w/ doxycyline is really helping. i have to warn you that ur symtpoms may initially feel worse at first, but it will eventually get better, but it may take MONTHS. u really have to be patient: it could take over a year to get better. but keep at it, even if it doesnt seem to be working. i can see a sig difference b/c when i squeezed my oil glands a few months ago i used to have yellowish oil that looked like toothpaste come out. but now its more liquid and clear. be patient. oh, and stop wearing eye makeup for now. also, i doubt i have rosacea but u should go to a derm about that.
i have a few questions for you: what other symtpoms do u have? do u wear contacts? where r u from? i live in hawaii.
alright, sorry its so disorganized but i'm kinda just saying things that come to mind. u should look it up online, some info may help. but u should start treatment asap..dont wait for 2 years like me. i heard that u can have permanent damage to the glands, but my doc said he doesnt think mine has had any, esp since treatment does show progress.
ok, update me and hope this helps. i'll keep us all in my prayers. just know that someone else knows exactly how u feel. u should read cslewis (jen)'s posts. she got competely over it, so i believe so will we. take care and let me know.

 
Old 09-21-2005, 12:09 AM   #8
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Re: Update - MGD/Ocular Rosacea/Bleph

Hey Mike,
Here's what i posted before. it lists all my symptoms and my treatment regimen. pls let me know if u have any questions after u read it and i'll gladly answer them:
my symtpoms began w/ just swelling/puffiness. i had some stinging or burning once in a while, but it wasn't much. i know how u feel, but imagine how bad it was for me at 17!!! u were there, u know how teens are still going thru changes...it was such a blow to my self esteem, i was soooo depressed. even now at 21, i still wanna look good u know? i was really very happy w/ the way i looked, not to be vain, so it was really hard. anyways, to answer ur question, about a year ago my eyes started acting up real bad, w/ the stinging and burning. it might also have been b/c i was on accutane, which can dry up ur eyes. so i went to another opth and he finally told me i had blepharitis, meibomitis to be specific. so i began my treatment. at first the warm compresses were really really iritating my eyes. but after about a week it got a lot better, but not great. well, i kept on warm compresses, about 10 minutes each, twice a day for about a year. my symptoms were stable but not gone, but maybe cause i wasn't clean w/ my lids; i still were eye makeup and contacts all the time. but i think w/ meibomitis makeup isn't as much a factor than w/ like anterior bleph. anyways, i finally decided to take a break from college to take care of the problem, and about two months ago i started a RIGOROUS treatment. i also started doxycycline. i'm not completely better, but i do believe its improving. i feel like its getting better and not just status quo like how it used to be. my lids are still puffy w/ undereye bags, but i think its been better. the swelling changes daily, but i never had it as bad as before. so i really believe and pray that it is finally on its path to recovery. i know it will still take a while, but hopefully i can become symptom free soon. let me tell you what my treatment consists of:
1) warm compresses for about 10 min each, 4-5 times a day
2) lid massages after the compresses. its hard to describe and there are many ways to do it, but basically i press down on the edge of my lids where the meibomian glands are to express the oil, top and bottom lid. i also slide my finger across the edge- i think it may help.
3) lid scrub after massage: dip a q-tip into a mixture of water and johnson's baby shampoo (about a 10:1 ratio - more water) and scrub my lids (where the lashes are) w/ it. some people find this irritating so its up to u. i personally believe w/ meibomitis this part may not be THAT crucial, unlike anterior bleph, but it prob helps.
4) before bed i do my last warm compress. after that instead of the conventional massage i "squeeze" out the oil. its actually my own "invention" and i haven't heard anyone do it before, but i think it really helps get teh oil out. what i do is I squeeze out the oil in the meibomian glands w/ my fingers. u gotta find what works for u most, but i hold it between my index finger of one hand and press down on it w/ the index of another for top and bottom lids. i can really see the oil come out. i have never confirmed this w/ my opthm, but i really doubt it would hurt the glans. really not sure though. i think it has helped.
5) before bed, i apply erythomycin ointiment onto my lids. this is usually for bleph, but the corner of my left lid is kinda sore so i think it helps.
6)doxycline (w/ a bit of food so it doesnt irritate my stomach) once a day (100 mg). my doc started off w/ twice a day for a month, and then once a day.
i honestly feel that it is slowly getting better. i haven't had a really bad "flareup" for a while (knock on wood). so i think this intensive treatment w/ doxycyline is really helping. i have to warn you that ur symtpoms may initially feel worse at first, but it will eventually get better, but it may take MONTHS. u really have to be patient: it could take over a year to get better. but keep at it, even if it doesnt seem to be working. i can see a sig difference b/c when i squeezed my oil glands a few months ago i used to have yellowish oil that looked like toothpaste come out. but now its more liquid and clear. be patient. oh, and stop wearing eye makeup for now. also, i doubt i have rosacea but u should go to a derm about that.
i have a few questions for you: what other symtpoms do u have? do u wear contacts? where r u from? i live in hawaii.
alright, sorry its so disorganized but i'm kinda just saying things that come to mind. u should look it up online, some info may help. but u should start treatment asap..dont wait for 2 years like me. i heard that u can have permanent damage to the glands, but my doc said he doesnt think mine has had any, esp since treatment does show progress.
ok, update me and hope this helps. i'll keep us all in my prayers. just know that someone else knows exactly how u feel. u should read cslewis (jen)'s posts. she got competely over it, so i believe so will we. take care and let me know.
oh and mike, what treatment did ur doctor tell you to do? how many times a day? did he say that people w/ mgd can always recover? thanx!

Last edited by Ladymoon; 09-21-2005 at 12:17 AM.

 
Old 09-21-2005, 05:29 AM   #9
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Re: Update - MGD/Ocular Rosacea/Bleph

hey ladymoon,
Thanks for a great reply. I live in new hampshire up here in new england, not quite as nice as hawaii. I also had the same symptoms as you did when it started, with the puffy eyes and redness. I went to see the dr when this started and they said it wasent an eye problem but I was just having migraines. So I went on migraine meds and no improvement and I said again that it was my eyes to my dr and he sent me to another eye dr that said its a sinus infection, going round and round I went to an ent I also know the ent she said michael I clearlly see that you have something going on with your eyes. so this went on for 3 months before I went to boston to see a dry eye specilist. Finally I got some type of answer they told me that my lower eye glands were very plugged. They told me to do warm compresses and if it didetn get better in a few weeks call them they would put me on doxy and it would usually clear it up in about 3 months. So I went on the warm compresses and very very little improvement after three weeks so back I went and they sent me to another dr that specilizes in conditions of the eye. She then told me that It was not the worst case she had ever seen but still pretty bed so she put me on the doxy, and tobredex and restasis. Well I found out that im allergic to the doxy really quick so that wouldent work so I did ten days on the tobredex and she said to stop after that and then she put me on erythmicyen ointment and zythromax 250mg she said that erythymycin and zithromax also help if you cant take the doxy. I dont know if its true it made a small difference in the 2 and a half months I have taken it. The dr did tell me that it does take months even a year or more to clear it up. I guess my concern is that without taking the doxycycline that I wont get better I cant find any info that says erythymicin or zithromax orally will help. So I have become discouraged due to this but the dr assures me its gonna get better im 29 sh says im young enough to get better and that its going to clear up but you just never hear of anyone saying hey im better and its gone(other then jen).
As for the symptoms I started out with red eyes and eye pain. Then my vision went a little funky I dont know if anyone else has had visual disturbances but its not a pleasent time. I feel like I cant squint and I think its due to the inflamation and I am worried that because it took so long about 4-5 months to diagnose that I have done permanate damage to my eyes and the glands. You said that you can permanatally damage the glands I hope I dident do that. I wish more people could say I am better now and thatits not bothering me anymore so I could feel that there is a light at the end of the tunnel. Doing the smallest things in life seem to be difficult from weird painfull eyes. Did you also get that feeling with your eyes and did the eyes also feel all swollen?
Sorry for all the babbel its just nice to be able to relate this to someone else in the world. You also said you had yellowish oil that looked like toothpaste that came out how do you see what the oil looks like I would like to see how mine looks the dr said it was a toothpase like looking oil and it would get alot better in time with treatmen of this and I could clear this up if I keep working at it. I just need to know if you really can clear up the symptoms of this horrible condition I dont mind working at it I just want to get better that is all.
Ladymoon thanks again for a reply and sorry for babbling on for so long...

 
Old 09-21-2005, 09:38 PM   #10
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Re: Update - MGD/Ocular Rosacea/Bleph

Hi everybody- calibug and Ladymoon I'm so happy to hear you're doing better. That's great!!! And calibug, thanks a lot for the info on rosacea, etc. I guess I just keep expecting symptoms to appear on my face, but maybe that's not always true with ocular rosacea. Maybe it can just stay localized to the eyes. What is that cream you're using - Noritate? Is it by Rx only, or is it something I can get over the counter? I haven't really been using anything on my face. I just clean it with this product called Olay for Sensitive Skin and it seems to work well. Not very irritating because it's soap-free and fragrance-free. It's also really cheap!! I used to use really expensive products on my skin (Estee Lauder), but I threw all of them out. What a waste. Okay guys, good to hear from you.

And Mike, NJpeg - do NOT lose hope! These eye conditions are REALLY frustrating. As you've heard from other people here, it takes a LOT of patience and hard work to get them under control. For me, I'd have to say what helped me the most was definitely the warm compresses, preservative-free artificial tears, and doxycycline (oh, and a good doctor). That's all - nothing else. When my eye symptoms first appeared back in 2003, I was an absolute, miserable mess! The first doctor I went to see was just throwing drug after drug at me to see if anything would work. He wasn't really trying to get to the root of my problem which made me very upset. And my condition just kept getting worse and worse! Then he wanted to put permanent plugs in my tear ducts but I refused to let him do that. I finally decided that I wasn't going to put another single drop of any drug in my eyes (except artificial tears) and just focused on doing the warm compresses. I can't tell you how much my eyes improved over the next several months! And then when I found a new GOOD doctor and started doxycycline, I was well on my way to recovery. But it still was a REALLY long, slow road. Now I am better, but my life is changed forever. I am always thinking about my eyes and wondering if those awful symptoms will ever return. If it's any consolation, I know what you guys are going through right now. Im sure you keep thinking about when the day will come when you will be symptom-free. Just so you know - that day will come but it's a really long and slow process (at least it was for me). My recovery was extremely gradual, and it would take weeks to notice just the slightest, tiniest improvement. I'm not kidding - we are talking weeks!! Now that I'm better, I don't take anything for granted. I feel like I've been to hell and back. And my family has had to suffer through this with me as well. What an experience. But you should know that you will eventually get better, and when that day finally comes you'll be a much stronger person for it. Okay, let me know if you have any other questions. I'll try to answer as soon as I can. Sorry it took me so long to respond this time.

Jen

 
Old 09-22-2005, 04:07 AM   #11
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Re: Update - MGD/Ocular Rosacea/Bleph

hi mike,
yeah, i really really get encouragement when people like jen relate how they completely got over it. i dont really know if u can get permanent damage, but im quite sure u didnt b/c i didnt get diagnosed for 2 1/2 years!!! and my doctor said that i don't have permanent damage; in fact, lately i know its been improving steadily and i have faith it will clear up. im so upset and can't help thinking that if i had just known this when i first got it i would be over it by now and my life would be so much better.
but looking forward, my doctor tells me that its chronic and that people never really get completely over it. but jen did and i have heard about people who have and a lot of other doctors say it can be cleared. my doctor said the condition is in good control right now, but i still have some clog/ infected glands he can see on the inside. my goal is to get rid of that.
im taking doxy and i really think it has helped me, so i do think doxy can really help. however, if ur allergic don't dispair b/c i know a few (marie55, for example) who got over it w/out doxy. so i'm sure u could too. i think the main thing is to have faith...i'm only 21 so i'm younger than you. i believe we can both get over it. it took me a year to get to this point where im really seeing constant improvement w/ treatment (although my first year of treatment was not too good), so u have to be patient. its chronic in the sense that you really really need to continue the treatment for months and months before seeing significant improvement; you'll also get flareups but dont get discouraged. dont' give up and don't stop treatment...i was where you are now and i can say that you will get better. there was a point where i didnt think i could say that either. but be presistent, stick to a diligent regimine and i'm sure u'll do fine. let me know if u have other questions. oh yeah, and my eyes do feel swollen sometimes but it is always puffy, kinda like i'm really really tired, even when i dont have other symtpoms.
ok, take care and keep me updated.

 
Old 09-23-2005, 05:54 AM   #12
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Re: Update - MGD/Ocular Rosacea/Bleph

thanks again for all your help. I do have another question? What is a flare up. I figure its when it comes back but is it just as bad as when it starts? And did anyone have a weird vision with this condition?

 
Old 10-06-2005, 05:10 PM   #13
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Re: Update - MGD/Ocular Rosacea/Bleph

Hi,
I have same condition since November/04. Took doxy for 3 months. Now, I'm doing warm compresses and lid washes. I do massages but find they really irritate my lids. My vision is not right. I have difficulty getting things in focus and it seems like things are not clear. Often, my vision blurs when I'm reading. Like you, Mike, I wonder if I will ever get over this, but there has been some improvement since I was diagnosed. Keeps me going. We must persist.
BB

 
Old 10-07-2005, 01:32 AM   #14
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Re: Update - MGD/Ocular Rosacea/Bleph

flare ups are when it feels like you're getting worse BUT its not. continue the compresses!

 
Old 10-07-2005, 05:17 AM   #15
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Re: Update - MGD/Ocular Rosacea/Bleph

Thank you very much. I do have weeks when I feel like im getting worse and its frusterating. I think that my vision is impaired from the swelling but I dont know its frusterating. I just hope to get to a point that this does not run my life.

 
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