Announcement

Collapse
No announcement yet.

General poll: do ppl that have ocular rosacea have worse or better facial rosacea?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • General poll: do ppl that have ocular rosacea have worse or better facial rosacea?

    It's subtype 4, so you'd kinda think that the skin would get worse then those that dont have it, but I'd like to think otherwise!

  • #2
    ???/

    Originally posted by moore778899 View Post
    It's subtype 4, so you'd kinda think that the skin would get worse then those that dont have it, but I'd like to think otherwise!
    Its a difficult question to make a qualification upon. I can only speak for myself inasmuch as over all the years I had
    rosacea I only suffered from blepharitis in the last third of the experience. I have seen people though with subtype 4
    but no facial redness so its a difficult one.!

    I went shopping for a book last week the person who served me had really bad ocular and like a garland of cherry angiomas round her neck down to her bust. Bit of redness on face and chest and angiomas on her arms and dermatitis on her fingers. So ?????

    Having ocular symptoms has many implications from work related issues, personal self esteem, the every worrying factor of will it ever get better or even much worse and if worse will I loose my income. I think its worse than having rosacea myself.

    Comment


    • #3
      Originally posted by moore778899 View Post
      It's subtype 4, so you'd kinda think that the skin would get worse then those that dont have it, but I'd like to think otherwise!
      I don't think this is true. You can have ocular rosacea without facial rosacea and vice versa. I believe that while they are most definitely related they are not directly so.

      Comment


      • #4
        Personally, my ocular symptoms are more severe and it is absolutely unnerving to deal with the horrid eye irritation.I have friends with facial rosacea only,and they can at least lead a somewhat normal life.I pray for us all.

        Comment


        • #5
          Sandra,
          I am so sorry you are going through this.
          What have you done to try and alleviate your ocular symptoms?

          Best,
          Melissa

          Comment


          • #6
            Ive been having terrible sensitivity to l ight and heat with my eyes. Its been horrible. I also get this whitle junk in corner of eye and on lower eyelid. sometimes it is on my eye as well. Not sure if this constitutes ocular rosacea or if it is some form on conjuctivitis? I have heard of the burning, irritation of ocular rosacea but I really never hear people getting the white junk in the eye.

            Anyone get this white junk?
            Doug

            Comment


            • #7
              In response to Melissa

              Thank you for your concern. I am on my 4th Opthamologist,been to see Dr. Stephen Foster in Mass,seen Dr.L in NY who finally diagnosed me with the ocular roasacea and now my new Doc says I also have ocular surface disease(and please don't anyone tell me what that is as I promised myself for my own sanity)not to look it up.

              Meds-tried lotemax,alrex,zylet,azasite(reacted severely to them all except rubbing azasite on my closed lids was not bad)almost every brand preservative free tears,baby shampoo and sterilid lid scrubs,tried Dr.L's lid massage and now doing manuka honey on lids and my new doc says "see you again in 6 months!!!!!".

              My facial symptoms started after my eyes and I am on finacea,bromonidine 2x a day rubbed on my cheeks and 200 mg doxy(just cut back to 100 mg).Tried metronidazole (oral and topical),oracea,and some I cannot remember.

              My facial rosacea flushing is so horrid in the summer(heat is my main trigger and so far have not found any dietary)so,in this cold weather I am able to do some things daily if I stay inside out of the wind and sun.

              I did gluten free diet for 1 year,accupuncture(which has helped with the stress a lot and now mainly dealing with the eyes.

              New doc told me to stop lid massage as it is too irritating,but I think I will start it again as I have a lot of trouble lately with a bubble on my lower lid and if I push up on it(I can't see this myself as my vision is really blurred and gets moreso as the day goes on)oil comes out and the lid looks so bumpy when I use a magnifying glass.

              My bigges concern is trying to find a doc who is willing to help me and not dismiss me because they have no clue how to help me.My first Opth told me he did everything he could think of and to seek a pschiatrisst for help in living with it!!!!

              Anyone have any suggestions,I would be ever so grateful. Thanks,Sandy

              Comment


              • #8
                ?????

                Originally posted by sandra lee View Post
                Thank you for your concern. I am on my 4th Opthamologist,been to see Dr. Stephen Foster in Mass,seen Dr.L in NY who finally diagnosed me with the ocular roasacea and now my new Doc says I also have ocular surface disease(and please don't anyone tell me what that is as I promised myself for my own sanity)not to look it up.

                Meds-tried lotemax,alrex,zylet,azasite(reacted severely to them all except rubbing azasite on my closed lids was not bad)almost every brand preservative free tears,baby shampoo and sterilid lid scrubs,tried Dr.L's lid massage and now doing manuka honey on lids and my new doc says "see you again in 6 months!!!!!".

                My facial symptoms started after my eyes and I am on finacea,bromonidine 2x a day rubbed on my cheeks and 200 mg doxy(just cut back to 100 mg).Tried metronidazole (oral and topical),oracea,and some I cannot remember.

                My facial rosacea flushing is so horrid in the summer(heat is my main trigger and so far have not found any dietary)so,in this cold weather I am able to do some things daily if I stay inside out of the wind and sun.

                I did gluten free diet for 1 year,accupuncture(which has helped with the stress a lot and now mainly dealing with the eyes.

                New doc told me to stop lid massage as it is too irritating,but I think I will start it again as I have a lot of trouble lately with a bubble on my lower lid and if I push up on it(I can't see this myself as my vision is really blurred and gets moreso as the day goes on)oil comes out and the lid looks so bumpy when I use a magnifying glass.

                My bigges concern is trying to find a doc who is willing to help me and not dismiss me because they have no clue how to help me.My first Opth told me he did everything he could think of and to seek a pschiatrisst for help in living with it!!!!

                Anyone have any suggestions,I would be ever so grateful. Thanks,Sandy
                What would your reaction be if I said that you are causing this problem yourself and no amount of medical help will ever come close to giving you a solution.

                You see its like this I have been there myself and found out I was actually doing this it to myself its only my opinion of course. The cause is down to disordered eating mainly its just the way people eat and drink but the cold climate is part of the problem also. The condition of the skin and the eyes is decided in a persons stomach and when you eat in a disordered way it disturbs the healthy secretions for the skin and eyes.

                I am not being awful here and hope you will see the positive side as a means of bringing relief

                Comment


                • #9
                  Originally posted by sandra lee View Post
                  Thank you for your concern. I am on my 4th Opthamologist,been to see Dr. Stephen Foster in Mass,seen Dr.L in NY who finally diagnosed me with the ocular roasacea and now my new Doc says I also have ocular surface disease(and please don't anyone tell me what that is as I promised myself for my own sanity)not to look it up.

                  Meds-tried lotemax,alrex,zylet,azasite(reacted severely to them all except rubbing azasite on my closed lids was not bad)almost every brand preservative free tears,baby shampoo and sterilid lid scrubs,tried Dr.L's lid massage and now doing manuka honey on lids and my new doc says "see you again in 6 months!!!!!".

                  My facial symptoms started after my eyes and I am on finacea,bromonidine 2x a day rubbed on my cheeks and 200 mg doxy(just cut back to 100 mg).Tried metronidazole (oral and topical),oracea,and some I cannot remember.

                  My facial rosacea flushing is so horrid in the summer(heat is my main trigger and so far have not found any dietary)so,in this cold weather I am able to do some things daily if I stay inside out of the wind and sun.

                  I did gluten free diet for 1 year,accupuncture(which has helped with the stress a lot and now mainly dealing with the eyes.

                  New doc told me to stop lid massage as it is too irritating,but I think I will start it again as I have a lot of trouble lately with a bubble on my lower lid and if I push up on it(I can't see this myself as my vision is really blurred and gets moreso as the day goes on)oil comes out and the lid looks so bumpy when I use a magnifying glass.

                  My bigges concern is trying to find a doc who is willing to help me and not dismiss me because they have no clue how to help me.My first Opth told me he did everything he could think of and to seek a pschiatrisst for help in living with it!!!!

                  Anyone have any suggestions,I would be ever so grateful. Thanks,Sandy
                  Hi Sandy,
                  That is just awful. I am so sorry.
                  First of all I urge you not to do baby shampoo lid scrubs as those can be very irritating. If anything just use gentle warm compress to cleanse your lids/lashes before bed. Then you can use cool compresses to help with irritation.

                  Lid massage done gently may also be helpful. As well as continuing preservative free rewetting drops throughout the day even if you don't think it is helpful (as long as it is not irritating). Have you tried Restasis drops? They help calm chronic inflammation that can cause lid surface disease. And you may even want another short dose of ocular steroid drops to get you to a manageable level. But if you have not tried Restasis I would recommend you to do so and know it takes 6-8 weeks to fully realize the potential of this treatment.

                  What are your exact symptoms? Itching? Foreign body sensation? Or is it burning and irritation? Or lack of sensitivity of your corneas?
                  It is critical to describe exactly what your ocular symptoms are as that will help narrow down the cause and treatment. Ocular surface disease is a general term encompassing many different conditions.

                  Lastly, I know you are exhausted with seeing doctors etc especially ones who cannot help give you relief but I am a big believer in second opinions for cases just like yours. Sometimes a fresh pair of eyes (no pun intended) could be just what you need for finding the right treatment. Critical to this is an exact diagnosis though and that is why I would suggest another doctor for a second opinion- one who is affiliated with a teaching hospital as they will be up on all the tests necessary for proper diagnosis. And they won't be as likely to just give up.

                  Best,
                  Melissa

                  Comment


                  • #10
                    I just reread your post and see you mentioned fluctuating vision and that is indicative of tear film insufficiency so you certainly need some type of rewetting drops. Preservative free is a must so as not to further irritate your compromised corneal surface.

                    Also, are your symptoms worse in the AM or PM? And if you can exactly tell me what your specific ocular symptoms are that might be helpful.
                    Last edited by Melissa W; 6 December 2010, 10:42 PM.

                    Comment


                    • #11
                      Originally posted by drums View Post
                      What would your reaction be if I said that you are causing this problem yourself and no amount of medical help will ever come close to giving you a solution.

                      You see its like this I have been there myself and found out I was actually doing this it to myself its only my opinion of course. The cause is down to disordered eating mainly its just the way people eat and drink but the cold climate is part of the problem also. The condition of the skin and the eyes is decided in a persons stomach and when you eat in a disordered way it disturbs the healthy secretions for the skin and eyes.

                      I am not being awful here and hope you will see the positive side as a means of bringing relief
                      I don't think you are being awful at all as I have been researching the gut and skin conditions.

                      I eat very healthy(mostly chicken,turkey(rarely beef)veggies,limit fruit to 1 a day usually apples,pears,berries),no sweets,no pastas,no gluten. I drink only water and herbal,caffeine tea and am looking into getting a juicer and trying juices only.

                      I am up for any suggestions and thanks.Care to share your diet that has helped you?

                      Comment


                      • #12
                        Reply to Melissa

                        My main symptoms are the burning irritation which increases with a rosacea flush and rarely foreign sensation.My eyes are ok in the mornings usually and worsen as the day goes.They are always really bloodshot and sometimes usually the left lid will burn and if I massage it my vision gets really blurred(oil I think).

                        Right now I am applying the honey for lid scrubs and sometimes leave it on overnight and it seems to be helping at times.

                        As I said I have switched docs 4 times and 2 specialists but am looking into the Wills Eye Institute in Philadelphia and may travel to see them in the Spring.

                        The docs felt that I need to get the rosacea calmed before they can treat the eyes??? but the cold weather has calmed it somewhat and still the eyes become more irritated.

                        I have been to an Allergist(found none,but plan to be tested for food in the future),rheumatologist(nothing they can put their finger on just abnormal bloodwork),a Hematologist who feels I am in early stages of autoimmune disease(so he sent me back to the Rheumatologist who said the same as before and will retest me in 6 months).So it is like a roller coaster.

                        Have tried the warm compresses on and off for 2 years and they seemed to intensify the rosacea??? so it can be very confusing.

                        I have purchased many books on eyes and rosacea and they all pretty much say the same thing.

                        I have been on Restasis twice a day since August(this is my second time around with it) and preservative free drops do nothing and some even irritate right in the lids themselves when applied.

                        I thank you for your reply though and I just keep searching and the Eye Institute is my next route.Only drawback is the distance to travel on a regular basis.

                        I just keep searching the forums for new ideas so thanks again!!!! Sandy

                        Comment


                        • #13
                          Sandy,
                          Wills Eye Institute is an excellent place to go and if you can I urge to do so. You might not have to go back too frequently once they diagnose and start treating you and you may really find some answers there.

                          It sounds as if you have MGD with evaporative eye disease based on your symptoms and not so much tf insufficiency since you rarely experience fb sensation. When your rosacea flushing worsens it is normal that your ocular symptoms may get worse too and that is why the doctors want to better control your facial rosacea symptoms. I remember when my ear flushing was horrible that the VBeam treatments on my face actually helped my ears too without having to do laser on my ears.

                          As far as the Restasis goes it can sometimes be helpful to be on low dose ocular steroid drop therapy for a while at the same time as Restasis to allow it to work better.

                          When dealing with ocular surface diseases you have to realize it can take time and you must be persistent and use concomitant therapies to reach results. And realize as well that while you cannot cure it you certainly can manage your symptoms to the point you don't even think about them. Hang in there Sandy. You will find the right combo that works for you!

                          Best,
                          Melissa

                          ps the honey has helped lots of people here so fingers crossed for you!

                          Comment


                          • #14
                            Originally posted by sandra lee View Post
                            My main symptoms are the burning irritation which increases with a rosacea flush and rarely foreign sensation.My eyes are ok in the mornings usually and worsen as the day goes.They are always really bloodshot and sometimes usually the left lid will burn and if I massage it my vision gets really blurred(oil I think).

                            Right now I am applying the honey for lid scrubs and sometimes leave it on overnight and it seems to be helping at times.

                            As I said I have switched docs 4 times and 2 specialists but am looking into the Wills Eye Institute in Philadelphia and may travel to see them in the Spring.

                            The docs felt that I need to get the rosacea calmed before they can treat the eyes??? but the cold weather has calmed it somewhat and still the eyes become more irritated.

                            I have been to an Allergist(found none,but plan to be tested for food in the future),rheumatologist(nothing they can put their finger on just abnormal bloodwork),a Hematologist who feels I am in early stages of autoimmune disease(so he sent me back to the Rheumatologist who said the same as before and will retest me in 6 months).So it is like a roller coaster.

                            Have tried the warm compresses on and off for 2 years and they seemed to intensify the rosacea??? so it can be very confusing.

                            I have purchased many books on eyes and rosacea and they all pretty much say the same thing.

                            I have been on Restasis twice a day since August(this is my second time around with it) and preservative free drops do nothing and some even irritate right in the lids themselves when applied.

                            I thank you for your reply though and I just keep searching and the Eye Institute is my next route.Only drawback is the distance to travel on a regular basis.

                            I just keep searching the forums for new ideas so thanks again!!!! Sandy
                            Sandy, I'm sorry to hear your having such troubles. I can only sympathise!

                            It is so frustrating dealing with it. I have MGD and Bleph in both eyes, but my right eye has lesions over the eyelid (the think caused by allergies) but I cannot see this is the cause as the allergy eye drops did nothing.

                            Have you been tested for celiac disease? I hear some people have had success when they go on a gluten free diet. I have been tested and alas, this is not the problem.

                            I too have found the warm compress to be of little help and if anything irritates more. I shall try the drops Melissa recommends.

                            How did your eye problem progress?

                            There will be an answer of how to knock it into remission and as Melissa says, it'll be almost like you haven't got it. But it's a headache trying to find it!

                            Comment


                            • #15
                              Originally posted by drums View Post
                              What would your reaction be if I said that you are causing this problem yourself and no amount of medical help will ever come close to giving you a solution.

                              You see its like this I have been there myself and found out I was actually doing this it to myself its only my opinion of course. The cause is down to disordered eating mainly its just the way people eat and drink but the cold climate is part of the problem also. The condition of the skin and the eyes is decided in a persons stomach and when you eat in a disordered way it disturbs the healthy secretions for the skin and eyes.

                              I am not being awful here and hope you will see the positive side as a means of bringing relief
                              Thanks for your post on my other threat btw. I am not sure what you mean tho??

                              Interesting, I found this article after a quick google about MGD and Rosacea and that it is occurring more in the younger generation, linked to maybe higher fat intake...

                              'Rosacea is becoming more common in younger patients, which may be related to diets that are high in fatty acids. '

                              http://www.dailystrength.org/c/Dry_E...133-people-can

                              Also:

                              'Rosacea patients often have a reduced secretion of pancreatic lipase, an enzyme which aids in fat digestion. Pancreatic or plant enzyme supplementation, especially when prepared with extra lipase, will improve this digestive weakness'

                              http://www.diagnose-me.com/cond/C515509.html

                              Is this what you are getting at?

                              Comment

                              Working...
                              X