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  • Feeling pessimistic. Would appreciate supportive words, optimism, and/or advice.

    Hi,

    People keep telling me, basically, that no matter what I do my eyes are going to get worse.

    I have had ocular rosacea for only a month and wasn't even diagnosed until 2 weeks ago. This, after 7 years of dealing with facial rosacea. I have been swift and diligent in seeking treatment for my eyes. I do warm compresses twice daily and gentle lid scrubs with plain water (for mild blepharitis).*** I have not worn my contact lenses in a month. I am currently on day 6 of a month-long regimen of Doxycycline hyclate (100mg 2x daily) prescribed by my derm. Today, I saw my primary care physician, who visually inspected my eyes and eyelids and said that the insides of the lids actually look healthy and normal (no obviously clogged meibomian glands or anything like that).

    Although I initially presented with recurrent styes (in my left eye) and mild bleph (in my right), I've managed, through the gentle regimen described above, to keep the styes at bay and reduce the severity of the bleph (which was already mild to begin with). My eyes are not bloodshot, irritated, or dry. They look "normal" except for the little bit of "eyelash dandruff" (bleph) which no one but me likely even notices.

    In short, I was feeling optimistic.

    Yet some people in some online forums basically keep telling me, in spite of this, that it's just going to get worse.

    Does it inevitably HAVE to get WORSE??

    I mean: I caught this within 2 weeks of onset, unlike my facial rosacea, which went undiagnosed for the first 2 years, and then not properly treated for a year after that.

    I feel like people are ripping away any hope I have. I don't expect to be "cured"; I know this is chronic, just like my facial rosacea. But to just hear everyone say "You have no choice. It will get worse" is awful and demoralizing.

    Please---if anyone has any words of encouragement to offer, or has lived with ocular for awhile and managed to keep it more or less "stable," I would appreciate it.

    Thank you.

    ---

    ***I tried baby shampoo lid scrubs the 1st week, but these proved too harsh and gave me bloodshot/irritated/dry eyes, so I discontinued that and now, on the advice of my PCP, use just plain water.

  • #2
    There aren't any clinical papers I am aware of that with treatment Ocular Rosacea gets worse. In fact, the opposite is usually the case, that you will usually see improvement. You might want to ask your physician about Topical Cyclosporine or Avermectin Milbemycin Eyewash. For more info click here.
    Brady Barrows
    Blog - Join the RRDi


    Comment


    • #3
      Originally posted by oopsiedaisy View Post
      Hi,

      People keep telling me, basically, that no matter what I do my eyes are going to get worse.

      I have had ocular rosacea for only a month and wasn't even diagnosed until 2 weeks ago. This, after 7 years of dealing with facial rosacea. I have been swift and diligent in seeking treatment for my eyes. I do warm compresses twice daily and gentle lid scrubs with plain water (for mild blepharitis).*** I have not worn my contact lenses in a month. I am currently on day 6 of a month-long regimen of Doxycycline hyclate (100mg 2x daily) prescribed by my derm. Today, I saw my primary care physician, who visually inspected my eyes and eyelids and said that the insides of the lids actually look healthy and normal (no obviously clogged meibomian glands or anything like that).

      Although I initially presented with recurrent styes (in my left eye) and mild bleph (in my right), I've managed, through the gentle regimen described above, to keep the styes at bay and reduce the severity of the bleph (which was already mild to begin with). My eyes are not bloodshot, irritated, or dry. They look "normal" except for the little bit of "eyelash dandruff" (bleph) which no one but me likely even notices.

      In short, I was feeling optimistic.

      Yet some people in some online forums basically keep telling me, in spite of this, that it's just going to get worse.

      Does it inevitably HAVE to get WORSE??

      I mean: I caught this within 2 weeks of onset, unlike my facial rosacea, which went undiagnosed for the first 2 years, and then not properly treated for a year after that.

      I feel like people are ripping away any hope I have. I don't expect to be "cured"; I know this is chronic, just like my facial rosacea. But to just hear everyone say "You have no choice. It will get worse" is awful and demoralizing.

      Please---if anyone has any words of encouragement to offer, or has lived with ocular for awhile and managed to keep it more or less "stable," I would appreciate it.

      Thank you.

      ---

      ***I tried baby shampoo lid scrubs the 1st week, but these proved too harsh and gave me bloodshot/irritated/dry eyes, so I discontinued that and now, on the advice of my PCP, use just plain water.
      Hello and hugs!


      I had MGD and my eyes were tearing, bloodshot, red, gritty and I was losing eyelashes!

      I do eyelid scrubs using LIDCARE pre-moistened pads by Norvartis twice a day and use quite warm eyelid compresses.

      I used to use thera tears artificial tears when my eyes felt very sore and they were great!

      My eyes feel fine now( although I have continued treatment) and my eyelashes have returned.

      Ocular roascea CAN be controlled...........I also take thera tears omega supplements.

      Good luck!

      J
      SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


      *Vit D3,Theratears Omega 3.



      *LDN since October 2018.

      *REN skincare range. TARTE cosmetics.

      *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

      *Yearly IPL treatments until 2009.

      * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



      History of Hyperthyroidism (Graves) Lichen Planus (oral)
      PROUD TO BE DIFFERENT






      .

      Comment


      • #4
        Originally posted by Judworth View Post
        Hello and hugs!


        I had MGD and my eyes were tearing, bloodshot, red, gritty and I was losing eyelashes!

        I do eyelid scrubs using LIDCARE pre-moistened pads by Norvartis twice a day and use quite warm eyelid compresses.

        I used to use thera tears artificial tears when my eyes felt very sore and they were great!

        My eyes feel fine now( although I have continued treatment) and my eyelashes have returned.

        Ocular roascea CAN be controlled...........I also take thera tears omega supplements.

        Good luck!

        J
        Thank you!!!

        I saw my eye doc yesterday, and she recommended that I continue with warm compresses and lid scrubs (using plain water, as I seem to be very sensitive to cleansers) 2x daily. She also recommended Theratears, so it's nice to see that you've had some success with their products.

        I really appreciate your encouragement and the ray of light/hope you've offered me.

        Thank you again!!!!

        Comment


        • #5
          Originally posted by oopsiedaisy View Post
          Thank you!!!

          I saw my eye doc yesterday, and she recommended that I continue with warm compresses and lid scrubs (using plain water, as I seem to be very sensitive to cleansers) 2x daily. She also recommended Theratears, so it's nice to see that you've had some success with their products.

          I really appreciate your encouragement and the ray of light/hope you've offered me.

          Thank you again!!!!

          That's wonderful news!

          right back & here's to continued success!

          Judy
          SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


          *Vit D3,Theratears Omega 3.



          *LDN since October 2018.

          *REN skincare range. TARTE cosmetics.

          *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

          *Yearly IPL treatments until 2009.

          * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



          History of Hyperthyroidism (Graves) Lichen Planus (oral)
          PROUD TO BE DIFFERENT






          .

          Comment


          • #6
            Diet

            Originally posted by oopsiedaisy View Post
            Hi,

            People keep telling me, basically, that no matter what I do my eyes are going to get worse.

            I have had ocular rosacea for only a month and wasn't even diagnosed until 2 weeks ago. This, after 7 years of dealing with facial rosacea. I have been swift and diligent in seeking treatment for my eyes. I do warm compresses twice daily and gentle lid scrubs with plain water (for mild blepharitis).*** I have not worn my contact lenses in a month. I am currently on day 6 of a month-long regimen of Doxycycline hyclate (100mg 2x daily) prescribed by my derm. Today, I saw my primary care physician, who visually inspected my eyes and eyelids and said that the insides of the lids actually look healthy and normal (no obviously clogged meibomian glands or anything like that).

            Although I initially presented with recurrent styes (in my left eye) and mild bleph (in my right), I've managed, through the gentle regimen described above, to keep the styes at bay and reduce the severity of the bleph (which was already mild to begin with). My eyes are not bloodshot, irritated, or dry. They look "normal" except for the little bit of "eyelash dandruff" (bleph) which no one but me likely even notices.

            In short, I was feeling optimistic.

            Yet some people in some online forums basically keep telling me, in spite of this, that it's just going to get worse.

            Does it inevitably HAVE to get WORSE??

            I mean: I caught this within 2 weeks of onset, unlike my facial rosacea, which went undiagnosed for the first 2 years, and then not properly treated for a year after that.

            I feel like people are ripping away any hope I have. I don't expect to be "cured"; I know this is chronic, just like my facial rosacea. But to just hear everyone say "You have no choice. It will get worse" is awful and demoralizing.

            Please---if anyone has any words of encouragement to offer, or has lived with ocular for awhile and managed to keep it more or less "stable," I would appreciate it.

            Thank you.

            ---

            ***I tried baby shampoo lid scrubs the 1st week, but these proved too harsh and gave me bloodshot/irritated/dry eyes, so I discontinued that and now, on the advice of my PCP, use just plain water.

            Comment


            • #7
              Diet--Occular rosecea

              A histamine free diet works wonders for me. When I cheat, It show in 2-3 days--not the next day-- I flare up for weeks. It really restricts you, but it works.

              After awhile of compliance and on rare occaisions, I will have a little of my favorite food--like one piece of pumkin pie. I was okay 'til I had another piece later on the week.

              Try it. it may take 3 weeks. But once your last flare up passes, you'll be home free 'til you cheat.

              Don't stop your doxy or topical stuff you do.

              Comment


              • #8
                Originally posted by drsbollinger5 View Post
                A histamine free diet works wonders for me. When I cheat, It show in 2-3 days--not the next day-- I flare up for weeks. It really restricts you, but it works.

                After awhile of compliance and on rare occaisions, I will have a little of my favorite food--like one piece of pumkin pie. I was okay 'til I had another piece later on the week.

                Try it. it may take 3 weeks. But once your last flare up passes, you'll be home free 'til you cheat.

                Don't stop your doxy or topical stuff you do.
                Hi,

                Thank you for the suggestion. I just might give this a try. Are there any guidelines online for foods with histamine? (There are quite a few, no?)

                Comment


                • #9
                  http://www.urticaria.thunderworksinc...whistamine.htm

                  I don't have oculair rosacea, so I don;t have any helpful advice, hope you get rid of it. Soon.

                  Comment


                  • #10
                    How are you getting on?

                    Originally posted by oopsiedaisy View Post
                    Thank you!!!

                    I saw my eye doc yesterday, and she recommended that I continue with warm compresses and lid scrubs (using plain water, as I seem to be very sensitive to cleansers) 2x daily. She also recommended Theratears, so it's nice to see that you've had some success with their products.

                    I really appreciate your encouragement and the ray of light/hope you've offered me.

                    Thank you again!!!!

                    Just wondered how things are going with your eyes?

                    J
                    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA SINCE 2002.


                    *Vit D3,Theratears Omega 3.



                    *LDN since October 2018.

                    *REN skincare range. TARTE cosmetics.

                    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

                    *Yearly IPL treatments until 2009.

                    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).



                    History of Hyperthyroidism (Graves) Lichen Planus (oral)
                    PROUD TO BE DIFFERENT






                    .

                    Comment


                    • #11
                      ocular rosacea

                      Hi I've had ocular Rosacea for years now. Symptoms were mostly very dry eyes, sometimes some crusting and discharge, sometimes the feeling like a foreign object in my eyes. Ocusoft lid scrubs and restasis controlled these symptoms for years. About a year ago added lacrisert inserts which I use every few days. Went to the eye doctor yesterday and she said they looked pretty good. Would like me to do 5 minutes of heat once a day, but that's hard because my face flushes to heat. I personally believe that with proper care you should be ok
                      Arlene

                      Comment


                      • #12
                        I find that drinking coconut kefir water helps my ocular rosacea quite a bit. Not sure it would help you, but it has done wonders for my skin and eyes.
                        Regards
                        Queta
                        "Do not go where the path may lead, go instead where there is no path and leave a trail."
                        Ralph Waldo Emerson

                        Comment


                        • #13
                          Originally posted by queta View Post
                          I find that drinking coconut kefir water helps my ocular rosacea quite a bit. Not sure it would help you, but it has done wonders for my skin and eyes.
                          Regards
                          Queta
                          Can u buy this in any supermarket?

                          Comment


                          • #14
                            Originally posted by arb161 View Post
                            Hi I've had ocular Rosacea for years now. Symptoms were mostly very dry eyes, sometimes some crusting and discharge, sometimes the feeling like a foreign object in my eyes. Ocusoft lid scrubs and restasis controlled these symptoms for years. About a year ago added lacrisert inserts which I use every few days. Went to the eye doctor yesterday and she said they looked pretty good. Would like me to do 5 minutes of heat once a day, but that's hard because my face flushes to heat. I personally believe that with proper care you should be ok
                            Arlene
                            Thank you. Hearing your story and info. about some possible treatments is helpful.

                            Comment


                            • #15
                              Originally posted by Judworth View Post
                              Just wondered how things are going with your eyes?

                              J
                              Hey----thanks for checking in!

                              I just posted again, and my post provides a basic update: http://www.rosaceagroup.org/The_Rosa...ops-for-PM-use

                              Comment

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