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  • Ocular Rosacea, possible blepharitis, PLEASE HELP

    Hello Everyone. I've been lurking around here the past few weeks frantically searching posts to try and figure out what is going on with my eyes. I have been recently diagnosed with Ocular Rosacea by an eye doctor and derm, but I need help figuring out the specifics of what is affecting my entire eye area so that I can treat it. This winter I had an explosion of rosacea symptoms along with a mild case of seb derm on my scalp and forehead. The seb derm seems to be mostly under control using strong dandruff shampoo.

    My skin has calmed now and has stopped flushing due to very gentle care and using Avene products, but my eyes are getting worse and worse. Back in december, I noticed some redness and tiny bumps under the skin in the folds on my eyelids. I had had all kinds of other skin problems so I figured whatever "rash" I had, had spread to my eyelids. I had some burning in the corners of my eyes too on the skin. Now my eyelids are swollen on the top and bottom, I have really prominent dark circles under my eyes, my eye lashes are growing in sideways in spots and I have had some lash loss. I also have a web of prominent veins/blood vessels on my lids. The skin under my eyes extending down onto the tops of my cheeks is wrinkled, and on top of all of this my eyes have the classic dry, gritty, burning, and slight vision blurring.

    I have stopped using all cosmetics on this area, I am using Ocusoft Lidscrubs at night to cleanse and using a warm compress almost every night. The eye doctor/derm both said they did not think I had MGD, as I have no bumps or redness/irritation on my ACTUAL lid margin, and aside from a very tiny amount of crust from my eyes watering I dont have that yucky crud that people who have actual Blepharitis seem to have. I am using a small amount of metrogel mixed with moisturizer every night which seems to keep the pimples and bumps on the rest of my face at bay, but I need some serious help getting my eyes under control.

    I have been given a scrip for doxy 20mg which I will start in a few days, which hopefully will help with my actual eyeballs and the inflammation there, but has anyone had any luck wth doxy helping swelling? Can anyone tell me whether this does indeed sound like blepharitis? There seems to be a TON of confusion around whether swelling in rosacea eyes is vascular, as in an issue with the veins around the eyes releasing fluid, or whether it's bacterial/bleph/swelling from blocked MGs. I also taking curcumin supplements and omega 3 fish oil pills to help with inflammation but I have noticed no change in my eyes. Has anyone here heard of or tried using Pycnogenol supplements? I have read that they are excellent anti-inflammatory and also aid in strengthening blood vessels and helping regular the blood vessels release of fluid to surrounding tissue. I am considering trying this as I am DESPERATE for something to make my eyes return to normal.

  • #2
    Kdodge-
    I am sorry you are having eye issues. It is very frustrating. The doxy does help with the swelling but it takes time. I had a really bad eye flare up back in November 2011 and was prescribed 50mg doxy 2x a day(along with warm compresses 4x/day and lid scrubs. I use sterilid). If you don't mind me saying, I think you might need stronger than 20mg initially to get this under control. Afterwards, you can taper down to a lower dose. I'm still on doxy now, but only every other day for maintenance. Many people here are on oracea which is 40mg doxy. In my opinion, I would go see another opthomologist who specializes in dry eyes because they are most familiar with the protocol for blepharitis/ocular rosacea/mgd etc. The sooner you get this under control, the better.

    Comment


    • #3
      Originally posted by Peppermint View Post
      Kdodge-
      I am sorry you are having eye issues. It is very frustrating. The doxy does help with the swelling but it takes time. I had a really bad eye flare up back in November 2011 and was prescribed 50mg doxy 2x a day(along with warm compresses 4x/day and lid scrubs. I use sterilid). If you don't mind me saying, I think you might need stronger than 20mg initially to get this under control. Afterwards, you can taper down to a lower dose. I'm still on doxy now, but only every other day for maintenance. Many people here are on oracea which is 40mg doxy. In my opinion, I would go see another opthomologist who specializes in dry eyes because they are most familiar with the protocol for blepharitis/ocular rosacea/mgd etc. The sooner you get this under control, the better.
      Thank you very much for your reply! The problem is that the oracea is about $450 a month which there is no way I can afford. The next step after the 20 mg is 50 mg, and also isnt slow release like the oracea.. But I had previously been on 200mg of doxy a day because this was originally misdiagnosed as perioral dermaititis, which they prescribe a higher dosage for because they suspect it is bacterial and for a longer period. I fell asleep shortly after taking one of the big pills (which you arent supposed to do) and singed my esophagus. She thought where I had major GI distress last time it would be wise to tread lightly.. Another thing is that I am pretty sure I have a mild case of seb derm.. which flared badly last time I was on the doxy... Can you describe your eye flare up in more detail>? Was it limited to your eyeballs or did it affect the lids/surrounding tissue? Also can you elaborate at all on the actual differences between ocular R, bleph and MGD? Thank you again so much for your reply

      Comment


      • #4
        Kdodge-
        That's terrible about the gi/esophageal upset you experienced. I am very careful when I take doxy to remain upright for 1 hr at least to avoid this. And I drink a full glass of water with it before I start eating. I take it with food. I agree Oracea is really expensive. Are you just taking the 20mg 1x a day or 2x a day?In the beginning, I was originally prescribed 100mg by my derm, but my ophtomologist said it was better if I took 50mg 2x a day instead. If you are having an issue, you might want to take the 20mg 2x day. You want to get this under control soon. A mild steroid like lotemax will start working immediately and you will most likely see the results right away. I cannot tolerate the lotemax, but many people are fine on it.

        My eye flare up was awful. My entire upper eyelids swelled and were red. Also, my eyes felt very dry and I had terrible photo sensitivity.

        MGD is meibomian gland dysfunction and blepharitis is just the general term referring to eyelid swelling. Since the root cause of dry eye can be many things, people that have facial rosacea with an ocular component are deemed to have ocular rosacea. So you can, in essence have all three (mgd bc of ocular rosacea and if your lid margins are swollen then you also technically have blepharitis). It's confusing!

        Comment


        • #5
          Forgot to mention, many with rosacea have a higher than normal population of demodex mites on their face and lashes. This may contribute to the blepharitis. There are some that have had an improvement of symptoms using Cliradex. (some have found it irritating). I haven't tried this but wanted to pass it along. Here's a link to it via amazon.
          http://www.amazon.com/Cliradex-Lash-...adex+eye+wipes

          I use sterilid which has tea tree oil in it, but the cliradex I believe has a higher concentration of it. I also use a tea tree wash by Desert Essence as a facial cleanser.

          Also, if you haven't visited the dryeyezone.com yet, you should check it out. There are many resources and info for people suffering with this issue.

          Comment


          • #6
            Originally posted by Peppermint View Post
            Kdodge-
            That's terrible about the gi/esophageal upset you experienced. I am very careful when I take doxy to remain upright for 1 hr at least to avoid this. And I drink a full glass of water with it before I start eating. I take it with food. I agree Oracea is really expensive. Are you just taking the 20mg 1x a day or 2x a day?In the beginning, I was originally prescribed 100mg by my derm, but my ophtomologist said it was better if I took 50mg 2x a day instead. If you are having an issue, you might want to take the 20mg 2x day. You want to get this under control soon. A mild steroid like lotemax will start working immediately and you will most likely see the results right away. I cannot tolerate the lotemax, but many people are fine on it.

            My eye flare up was awful. My entire upper eyelids swelled and were red. Also, my eyes felt very dry and I had terrible photo sensitivity.

            MGD is meibomian gland dysfunction and blepharitis is just the general term referring to eyelid swelling. Since the root cause of dry eye can be many things, people that have facial rosacea with an ocular component are deemed to have ocular rosacea. So you can, in essence have all three (mgd bc of ocular rosacea and if your lid margins are swollen then you also technically have blepharitis). It's confusing!
            Yes I would like to avoid steroids at all cost. I may have to use them someday but they are a last resort to me. I am not thrilled about having to go back on doxy but to me it is a small price to pay to have my eyes back.
            I am confused about the compresses. Both the eye doctor and the derm encouraged me to use a warm compres ( I am assuming to make sure my MGs dont get plugged, and that is fine) but I think it is exacerbating the swelling. I may try doing cool or cold compresses for a few nights and see how they affect my eye area. When you had your ocular flare did you have swollen blood vessels on your eyelids? How are your eyes now? Your eyelids? To me when I see pictures of blephartis it looks swollen and cruddy in a bacterial way, and I have read a lot of posts on this website that people have cleared with medicated lid scrubs, wet ones, antibacterial emollient creams, etc, and my eye "blepharitis" or swelling seems different.. it seems like it is coming from the inside, not because of something ON my eyelids.. My lid margins seem fine despite the swelling so I dont think I have MG blockage but I guess if bleph is just "swelling of the eyelids" then I suppose I do in fact have blepharitis. Did you have any issues with your lower lids? any dark circles?

            Comment


            • #7
              Originally posted by kdodge View Post
              Yes I would like to avoid steroids at all cost. I may have to use them someday but they are a last resort to me. I am not thrilled about having to go back on doxy but to me it is a small price to pay to have my eyes back.
              I am confused about the compresses. Both the eye doctor and the derm encouraged me to use a warm compres ( I am assuming to make sure my MGs dont get plugged, and that is fine) but I think it is exacerbating the swelling. I may try doing cool or cold compresses for a few nights and see how they affect my eye area. When you had your ocular flare did you have swollen blood vessels on your eyelids? How are your eyes now? Your eyelids? To me when I see pictures of blephartis it looks swollen and cruddy in a bacterial way, and I have read a lot of posts on this website that people have cleared with medicated lid scrubs, wet ones, antibacterial emollient creams, etc, and my eye "blepharitis" or swelling seems different.. it seems like it is coming from the inside, not because of something ON my eyelids.. My lid margins seem fine despite the swelling so I dont think I have MG blockage but I guess if bleph is just "swelling of the eyelids" then I suppose I do in fact have blepharitis. Did you have any issues with your lower lids? any dark circles?
              A lot of people say that the warm compresses create more swelling in the short term but you need the compresses to be warm enough in order to keep the oil flowing in the meibomian glands. You could follow it with a cold compress. And you could add a couple of cold compresses to your routine. There are two types of blepharitis-anterior and posterior. I believe the anterior has more of the bacterial related component. The posterior is more of what rosaceans have and that includes mgd. You have to find out which you have. I had a combination of both and now I just have the mgd. Did the opthomologist check to see if your glands were blocked? They can do this by pressing on the lid margin under the slit lamp and seeing if mebum easily flows out.

              I have improved greatly since that flare up 2 years ago, but I still have a ways to go. I still have minor lid margin inflammation, more on my uppers than the lowers. My lowers are pretty good. I don't have any dark circles. I have been to several eye specialists and underwent lipiflow in October to unclog the glands. It helped a lot. I currently just started restasis, which helps with the ocular inflammation.
              Last edited by Peppermint; 25 February 2014, 06:34 PM.

              Comment


              • #8
                Hi

                I have acne vulgaris and rosacea (which I have had for 20 years) and have recently been told that as a result I also have blepharitis. This is because I would use no product or medication during pregnancy and feeding which caused my skin to flare up and my eyes to dry out!!

                I had some drops from the hospital which I was using six times a day and I use a warm compress (nearly hot!) on a night i then wipe / massage the top of my eyelids with a cotton bud or pad. In the morning I usually have some crusting beneath my eyes, which I think is the gunk releasing from underneath my lids. My eyes feel better on a morning than at any other time.

                I noticed that even using the drops my eyes would be red and irritated towards the end of the day including being sensitive to light. This worried me as I am going to the dermatologist soon to start Roaccutane and have been told by my doctor that this would cause my blepharitis to become worse. As a result I have started drinking water, an lots of it. Since drinking the water I have been able to stop using the drops, in fact this morning my eyes were red and irritated at 10am, but had cleared by the afternoon.

                Whatever you think of the idea it has to be a really simple thing to give a try!! I still do the compress and massage every night and when I start roaccutane I may have to start on some drops again, however I will be asking for different ones. My neighbour also has the condition and she told me that in a number of cases it can take a few tries of different drops etc before they find the one which suits your eyes and condition!

                Comment


                • #9
                  Baby Shampoo!

                  Hello Claire,

                  Sorry to hear about your troubles - I'm having a right 'mare with my eyes too (ocular rosacea). Having an incompetent GP doesn't help matters. All this medication is very expensive, but a cheap solution I've been advised is to dilute Johnson's baby shampoo (9 parts water to 1 part shampoo) and apply to the eyelids, including the inside of the lid, with a cotton pad. Apparently baby shampoo has antibacterial properties that help to combat blepharitis. Not quite as technical as everything else you've been advised, but hopefully it will help ease the symptoms and the finances! Good luck...
                  Last edited by Ginge; 15 May 2014, 08:52 PM.

                  Comment


                  • #10
                    This is a very very good thread. I'm not going to quote
                    Anyone but everyone has contributed to what explains
                    Symptoms very well and things that have worked for
                    People. I've tried the compresses, lid scrubs, no cosmetics,
                    Baby shampoo. I have been clear of bleph. And eye itchy-
                    Ness and swelling and redness with the use of manuka honey
                    Diluted with distilled water. Put a Q tip dab of the honey
                    On a cotton pad. Smear it around and dunk it in a Dixie
                    Cup of distilled water. Rub it back and forth on eyelids
                    Gently but firmly making sure the mixture soaks the
                    Eyelids. With a clean cotton pad soaked in distilled water
                    Rinse your eyes and pat dry. I do this 2 or 3 times a
                    Week. My eyelid margins are a normal " white" color
                    Now. If they get a bit reddish, I back off on treatment
                    For a day or two.

                    I posted this on another thread recently. Hopefully not this one!!
                    Birdie

                    Comment


                    • #11
                      Birdie, I am giving this a try. How long did it take before you noticed a difference? At first did you do it every day? Or did you just start off doing it a few times a week?

                      Thanks!

                      Comment


                      • #12
                        Originally posted by Faith1989 View Post
                        Birdie, I am giving this a try. How long did it take before you noticed a difference? At first did you do it every day? Or did you just start off doing it a few times a week?

                        Thanks!
                        Yeah. At first I did it every day as I was tinkering with Auburn's honey mask ( read that post if
                        You have not). What I discovered from the first application of honey was the itchiness and
                        Gunk in my eyes greatly reduced. But applying it every day was too much and made my
                        Eyelids puffy and reddish. After a couple months of applying it 3-4 times a week, I now
                        Do it once or twice. No more itch, red, gunk, bleph, etc.... My eyelids have always been
                        Very thin skinned and delicate. Always could see capillaries. Still can. I put on on
                        A very neutral color mineral eyeshadow to conceal this. Other than that, my eyes
                        Feel healthier now than they have in years. Hope this helps!!

                        Comment


                        • #13
                          Do you use artifical tears throughout the day? This is day two of manuka honey treatment and I think it may be getting better. How long have you suffered with the ocular rosacea? I am going on year 3 at the end of June. So far diet and Restasis have helped a small amount. I do not have facial symptoms really.. Just the painful eyes.

                          I really need relief!

                          Comment


                          • #14
                            Hi. I don't know how long I've had ocular rosacea.
                            Finally diagnosed fall of 2013. I was symptomatic
                            For years. I'm not using artificial tears right now
                            But I'm considering it. The honey has helped so
                            Much but I do have dry eyes. Hope you have
                            Luck with this!

                            Comment


                            • #15
                              Birdie, I have been feeling moderate relief with the honey slowly! This is a good sign just wanted to know how many weeks/months it took to achieve a full remission? I know it's different for everyone, but I was just curious

                              Thanks

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