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Dry eye, allergy eye, blepharitis, eye pterygium and eyes on FML for 3 years

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  • Dry eye, allergy eye, blepharitis, eye pterygium and eyes on FML for 3 years

    So basically I have all those things in my eye. Does anyone else have all those things? I have been suffering with them for almost 6 years. My eyes get SO red, like the whole white is just red, and not just veins like just RED. Sometimes itch, and sometimes have the gritty feeling but the biggest problem is the redness.

    I was first prescribed FML (fluorometholone) 3 years ago. My dr. at the time told me to use it 4 times a day for 2 weeks and then stop. That took away the redness for about 2 months then it would always come back. I would go back and he would tell me to do the same thing. I was with that dr for like 2 years then I had to change drs because of my health insurance. My new dr also prescribed FML but told me to taper off after a few weeks, like lessen the dosage towards the end.

    But no matter what I do, my eyes ALWAYS become insanely red even after I taper off. I feel like because they have been addicted to the FML for 3 years its going to be hard to do and I wonder if its even possible? :/

    Does anyone have any tapering advice?
    Right now I am trying
    4x a day for 1 week
    3x a day for 1 week
    2x a day for 1 week
    1x a day for 1 week

    I am on my 3rd week. Also does anyone think it would be good to use 1 drop every few days after that 4th week?

    I just recently started eye scrubs and warm massages about a month ago and restasis twice a day.

    I also use Zatidor and systane and genteal.

    ANY advice is so much appreciated.
    Thank you so much for your time and for reading.

  • #2
    Does anyone at least have any tapering advice?
    Wed. will be my last day and was wondering if I should instill a drop in my eye say 2 days later then 3 days later and then stop?


    • #3
      Hi & welcome!

      3 years of FML (cringing)

      On top of everything else that's an awful lot of BAK exposure (in addition to what's in the Zaditor).

      I'm sorry I can't comment on the tapering - how to use any Rx is out of my league. I would just try to pin the doctor down more specifically. I'm glad he's getting you off the FML. It's really tough to stop something that seems to hold redness at bay but some drops are one step forward, two steps backward and maybe that's what FML is for you at this point.

      With the scrubs and massages, be very careful, very gentle, and above all don't overdo it. Too much heat increases inflammation and redness. I'd do the minimum your doctor thinks necessary to improve the bleph. Did the doctor tell you any specifics about the condition of your meibomian glands?

      If you're not already doing this, I'd suggest some COLD compresses (in addition to, not in place of, the warm ones if you've been advised to do those) and rinsing with chilled unpreserved saline (Unisol 4 or equivalent) and minimizing any non-necessary drops if possible. Similasan allergy drops are sometimes helpful if the symptoms aren't too severe. I'm not crazy about OTC antihistamine drops... personally if I'm going to use one I'll go for the big guns for a short time.
      Rebecca Petris
      The Dry Eye Zone


      • #4
        I was on Lotemax for a while. I thought it was great as it turned my eyes as white as can be. But this steroid increased my eye pressure a lot, so my doctor took me off and I did the taper thing. Then I was allowed to use the steroid if I had a really bad flare up. Now I use FML ointment at night and it does not even come close to comparing to Lotemax, but I don't have the increase in eye pressure either. I have increased my restasis from 2 x daily to 4 x daily and that seems to help. Sometimes my eyes even feel moist.


        • #5
          To support Rebecca's advice about chronic use of FML.

          I think chronic use of FML drops (with BAK) to control surface inflammation due to MGD + antibacterials (preservative free vials) + Celluvisc as a tear film replacement = changes to LM's eye surface to the point where she does not have much of a tear reflex and is aqueous deficient, whereas 3y ago she just had chronic MGD and an evaporative dry eye. I can see surface changes (greyness, roughness) and no tear meniscus (pooling along the lower lash line).

          We know that this damage also affects osmolarity drawing moisture from inside the eye through the surface (see PubMed, search Baodouin).

          These surface changes are disappointing and her eyes are more dry and vascularised due to lack of tearing, even though we have mostly clear meibom (flaxseed oil, warm compress, antibacterials). I'm not just blaming FML for this since the other drops don't resemble natural tears much either.

          Just for info, we taper to the minimum FML for us which is 2/week, and as Rebecca says, this is absolutely up to the skill of the ophth.
          Paediatric ocular rosacea ~ primum non nocere


          • #6

            I have read many of your posts and it sounds like littlemermaid has been through a lot with her dry eyes. I have just recently started looking at sclerals for myself and have learned a great deal about this remarkable invention. I was wondering if perhaps littlemermaid might find some relief with scleral lenses? I believe children younger than her have been fitted at Boston Foundation for Sight.


            • #7
              Bella_girl, Very kind of you to think about her. She has chronic periorificial acne rosacea reinfecting the meibomian glands - the eye surface vascularises quite quickly if MGD flare-ups are not controlled well enough. How paediatric dry eye -> corneal opacification Blepharokeratoconjunctivitis in children, Moorfields UK. I'm just posting this up in case it's useful for anyone else.

              This is quite fast vascularisation but with reduced sensation, no burning. She can barely tell if her eye is dry and uses a mirror to see if she needs drops. So, sclerals... would lenses improve/worsen neovascularisation and opacification? I would think the surface needs to breath.

              On a good day she has a nice shiny eye with drops so my more depressing posts are during flare-ups and we are actually happy people with great docs A trip to the US is possible, but it has to be a paediatric surface disease specialist. Thanks again for thinking of her. Wish you the best of treatment and comfort.
              Last edited by littlemermaid; 13-Sep-2011, 14:21.
              Paediatric ocular rosacea ~ primum non nocere


              • #8
                Thank you for the replies. My dr. hasnt really given me specifics about my bleph. but just said to try warm compresses and cold compresses and use artificial tears every 2 hours. Yeah it's crazy to me how my old dr never even said anything like this about the FML and put me on and off it for so long. My eyes get so red every time i'm off it its like UGH

                What is BAK? I feel like my dr. hasn't really told me too much after reading all the forums on here and learning a lot more :/


                • #9
                  BAK is the preservative benzalkonium chloride 0.004% in our FML- ophthalmic suspension Fluorometholone 0.1%. Have a look at your ingredients. You will see FML does not 'fix' anything, it is to control the surface inflammation while you work on clearing your meibomian glands, if the ophth thinks they are clogged.

                  I do like a second opinion, maybe alternative suggestions. LM took oral antibiotics low dose for a while to try to clear MGs, also topical antibacterial ointment smeared on the lid margins.

                  Although the warm compress + keeping lid margins clean + flaxseed/fish oil have had the best improvement on the MGs for us, we need antibacterials too - are they working for you? Wondering whether you actually need FML though, and whether it's time for a reassessment of whether warm compress is enough to clear the MGs.

                  It's a bit of an art, is this. I do feel LM is getting even more reliant on various tear substitute drops and we are trying to reduce drops, restore tear function + healing the eye surface + restoring the MGs by various other means too - less drops, more humidity, goggles, diet. We are looking for a spiral of improvement. Sometimes you can find a better tear substitute drop if you are dependent, maybe one that works better on the surface.

                  Has anyone suggested punctal plugs?

                  Ocular surface damage by ophthalmic compounds, Rome Link to some research on this. Hope you can achieve better comfort by trying some of Rebecca's eye surface protection techniques as well as addressing the bleph.
                  Last edited by littlemermaid; 15-Sep-2011, 16:28.
                  Paediatric ocular rosacea ~ primum non nocere


                  • #10
                    Yeah I have had plugs for about 3 months. I don't really notice a difference but I just figure to keep them in.

                    My left eye is always worse and right now it's going back to its usual redness. It's weird though because Friday it was really red then saturday it wasn't, sunday it was and today its really red again.

                    Also i've noticed that my eyes look dark, is this a cause of dry eye?

                    A dr has never suggested antibiotics but I am trying to make an appointment... but its hard to get through at the hospital...

                    My left eye is also watering more. I have increased the systane do you think thats a reason why?


                    • #11
                      its hard to get through at the hospital...
                      This is the problem so many of us have, isn't it? Getting advice on how to adjust treatment and regular supervision. Certainly if you are on FML they should be checking your eye pressure regularly. I appreciate these are tricky problems to treat but I hope you can get some more attention out of your ophthalmologists.
                      Paediatric ocular rosacea ~ primum non nocere


                      • #12
                        I also had this question, every night for the past couple of nights I have been waking up in my sleep because I am rubbing/scratching my eyes so hard. Is this because of dry eye or allergies? I've done this before but just put refresh tears lubricant gel before sleep and seemed to help but not this time...


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