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  • FML for allergy + dry eye

    Hi,

    After my recent check up the opthalmologist suggested FML twice a day for a month to try and calm the inflammation. Still insiting the primary issue is allergy based on papillae presence on underside of eyelids but said my eyes were quite dry.

    So now on:
    twice a day FML for four weeks
    twice a day olopatadine
    Artifical tears every two hours

    I'm just wondering what others experience of FML is? I'm slightly worried about the side effects of being on a steroid drop for a month?

  • #2
    Villfan, FML has preservatives, unless they've found one available in UK that doesn't. We are using dexamethosone PF but down to 1/week, and no, I do not like it. It's a worry that they are doing pulse therapy with steroid eyedrops but have you had improvement? (eg as much as dexamethosone td in Oct) Yet they still think it's unresolved allergy or sensitivity.

    Olopatadine also has preservatives, doesn't it? And is quite powerful mainly used for blitzing vernal conjunctivitis(?) Maybe nip down to the hospital pharmacy for a chat about all this and make a new best friend. Some wonderful pharmacists are trained in medical counselling about prescriptions now and if you can find one of these out there in the community, you can have a good conversation about hypersensitivity to eyedrop ingredients, what reactions you've had on the different drops inc tear substitutes, and what's more widely available in UK - they can look it up on their database. Eg Catacrom (sodium cromoglicate 2%) is preservative-free?

    We tried the oral, Loratadine, but nothing improved on the eye sensitivities to eyedrops. The docs are thinking it's because it's type IV allergic sensitivity not type I (see Dr Google). Maybe if it was type 1 you would have other allergic signs like rhinitis and itching(?)

    You don't want to be making your sensitivities, therefore inflammation, worse and changing the eye surface as well. That's 4 loads of BAK/day now so I would have thought they could do better. TBH, looking back, I wish I'd listened to myself at this point.

    To get a spiral of improvement we've had to control inflammation, meanwhile adjust all the different factors.

    We're all rightly worried about steroid eyedrops but I need to know that the benefits outweigh the risks, and that without them things would be a lot worse. We have found we can taper to a minimum 1/wk once flareups are controlled (this is for ocular rosacea hypersensitivity due to recalcitrant perioral dermatitis).

    Now we are finding elimination of any possible allergens is a big help with the eyes. Have you had any luck with this? I'm talking detergents and environment. But that the eyes are really sensitive to lots of eyedrop ingredients. What tear substitute are you using? Any chance it's that?

    There is PF cyclosporine 0.06% easily available from Moorfields Pharmaceuticals in an aqueous base as a Restasis equivalent if they want it (PM me your email if you want the product list, can't see the point of it being restricted to pharmacists, it's not that exciting).

    If you want second opinion (or whatever opinion you're on, lol), you could get NHS referral to Moorfields for advice on the basis you're undiagnosed and unresolved. If there's any sign of red-eye on this Olopatadine, stop at once and back to the ophth. What you're looking for is skill and experience on working out what might be the causes.

    Are the meibomian glands definitely functioning despite the inflammation? Can you do the 2-finger gently press upwards under the lower eyelash line in the bathroom mirror in daylight and see if there's a tiny row of dots of oil along the eyelid margin? Do you have signs of sebaceous skin?

    Here's Scout's good thread on allergic conjunctivitis http://www.dryeyezone.com/talk/showt...light=cytology 'Chronic allergic conjunctivitis constitutes a complex ocular surface disease involving many mechanisms, extending well beyond the simple field of mast cells and IgE. Lacrimal film, the eyelids, the environment, especially iatrogenic in origin, closely interact with each other and involve many cell systems such as goblet cells, eosinophils, and lymphocytes. It is therefore imperative to reach a better understanding of the mechanisms associated and eliminate confounding pathologies that may mimic allergic conjunctivitis. Dry eye syndrome or rosacea may be very close to chronic allergic diseases, and long-term use of preservative-containing eyedrops may result in inflammatory reactions that may be very difficult to discriminate from a primarily allergic disease.' Prof Baodouin's team, Journal of French Ophthalmology 2007.

    http://www.eyeworld.org/ewsupplementarticle.php?id=401 May be something in this Eyeworld article about allergy in eyes that might help eg do you have itchy eyes, rash or sinus symptoms to suggest atopic allergy?

    Our ophth says he sees GPC with eyedrop sensitivities. And I've definitely seen bumpy red swellings under the eyelids with eyedrop reaction.

    It's always worth looking at the DEWS Report again, and the American Academy of Ophthalmology clinical guidelines, and get the latest from PubMed and Medscape, for ideas.
    Last edited by littlemermaid; 16-Dec-2012, 05:26.
    Paediatric ocular rosacea ~ primum non nocere

    Comment


    • #3
      Originally posted by littlemermaid View Post
      Do you have signs of sebaceous skin?
      Hi LM,

      Is there a connection between sebaceous skin and meibomian gland dysfunction? I have a very oily complexion and have recently started wondering whether this might in any way be connected to meibom production. Would really appreciate any info you could please direct me to.

      Comment


      • #4
        Originally posted by villfan22 View Post
        Hi,

        After my recent check up the opthalmologist suggested FML twice a day for a month to try and calm the inflammation. Still insiting the primary issue is allergy based on papillae presence on underside of eyelids but said my eyes were quite dry.

        So now on:
        twice a day FML for four weeks
        twice a day olopatadine
        Artifical tears every two hours

        I'm just wondering what others experience of FML is? I'm slightly worried about the side effects of being on a steroid drop for a month?

        Hi Villfan22,

        I tried FML for a month a long time ago (when I first had DE symptoms) to treat 'inflammation'- it was prescribed by an opthalmologist who was good, but who had little in depth knowledge about dry eye. It seemed to help a little as long as I kept using it, but was not a long term solution for my dryness and inflammation. I don't remember any side effects but like Littlemermaid, I am very cautious about using anything with BAK preservative.

        Has your optho been able to tell you a bit more about why your eyes are dry? If your eyes are still dry after your papillae has cleared, and your opthalmologist doesn't tell you what type of dry eye you have (e.g lacrimal gland dysfunction, meibomian gland dysfunction) then, based on my own experience, I recommend finding a doctor who can.
        Last edited by Lacrima; 18-Dec-2012, 14:03. Reason: edit info

        Comment


        • #5
          Hi Villfan22,

          I tried FML for a month a long time ago (when I first had DE symptoms) to treat 'inflammation'- it was prescribed by an opthalmologist who was good, but who had little in depth knowledge about dry eye. It seemed to help a little as long as I kept using it, but was not a long term solution for my dryness and inflammation. I don't remember any side effects but like Littlemermaid, I am very cautious about using anything with BAK preservative.

          Has your optho been able to tell you a bit more about why your eyes are dry? If your eyes are still dry after your papillae has cleared, and your opthalmologist doesn't tell you what type of dry eye you have (e.g lacrimal gland dysfunction, meibomian gland dysfunction) then, based on my own experience, I recommend finding a doctor who can.
          Last edited by Lacrima; 18-Dec-2012, 14:04.

          Comment


          • #6
            Originally posted by littlemermaid View Post
            Villfan, FML has preservatives, unless they've found one available in UK that doesn't. We are using dexamethosone PF but down to 1/week, and no, I do not like it. It's a worry that they are doing pulse therapy with steroid eyedrops but have you had improvement? (eg as much as dexamethosone td in Oct) Yet they still think it's unresolved allergy or sensitivity.

            Olopatadine also has preservatives, doesn't it? And is quite powerful mainly used for blitzing vernal conjunctivitis(?) Maybe nip down to the hospital pharmacy for a chat about all this and make a new best friend. Some wonderful pharmacists are trained in medical counselling about prescriptions now and if you can find one of these out there in the community, you can have a good conversation about hypersensitivity to eyedrop ingredients, what reactions you've had on the different drops inc tear substitutes, and what's more widely available in UK - they can look it up on their database. Eg Catacrom (sodium cromoglicate 2%) is preservative-free?

            We tried the oral, Loratadine, but nothing improved on the eye sensitivities to eyedrops. The docs are thinking it's because it's type IV allergic sensitivity not type I (see Dr Google). Maybe if it was type 1 you would have other allergic signs like rhinitis and itching(?)

            You don't want to be making your sensitivities, therefore inflammation, worse and changing the eye surface as well. That's 4 loads of BAK/day now so I would have thought they could do better. TBH, looking back, I wish I'd listened to myself at this point.

            To get a spiral of improvement we've had to control inflammation, meanwhile adjust all the different factors.

            We're all rightly worried about steroid eyedrops but I need to know that the benefits outweigh the risks, and that without them things would be a lot worse. We have found we can taper to a minimum 1/wk once flareups are controlled (this is for ocular rosacea hypersensitivity due to recalcitrant perioral dermatitis).

            Now we are finding elimination of any possible allergens is a big help with the eyes. Have you had any luck with this? I'm talking detergents and environment. But that the eyes are really sensitive to lots of eyedrop ingredients. What tear substitute are you using? Any chance it's that?

            There is PF cyclosporine 0.06% easily available from Moorfields Pharmaceuticals in an aqueous base as a Restasis equivalent if they want it (PM me your email if you want the product list, can't see the point of it being restricted to pharmacists, it's not that exciting).

            If you want second opinion (or whatever opinion you're on, lol), you could get NHS referral to Moorfields for advice on the basis you're undiagnosed and unresolved. If there's any sign of red-eye on this Olopatadine, stop at once and back to the ophth. What you're looking for is skill and experience on working out what might be the causes.

            Are the meibomian glands definitely functioning despite the inflammation? Can you do the 2-finger gently press upwards under the lower eyelash line in the bathroom mirror in daylight and see if there's a tiny row of dots of oil along the eyelid margin? Do you have signs of sebaceous skin?

            Here's Scout's good thread on allergic conjunctivitis http://www.dryeyezone.com/talk/showt...light=cytology 'Chronic allergic conjunctivitis constitutes a complex ocular surface disease involving many mechanisms, extending well beyond the simple field of mast cells and IgE. Lacrimal film, the eyelids, the environment, especially iatrogenic in origin, closely interact with each other and involve many cell systems such as goblet cells, eosinophils, and lymphocytes. It is therefore imperative to reach a better understanding of the mechanisms associated and eliminate confounding pathologies that may mimic allergic conjunctivitis. Dry eye syndrome or rosacea may be very close to chronic allergic diseases, and long-term use of preservative-containing eyedrops may result in inflammatory reactions that may be very difficult to discriminate from a primarily allergic disease.' Prof Baodouin's team, Journal of French Ophthalmology 2007.

            http://www.eyeworld.org/ewsupplementarticle.php?id=401 May be something in this Eyeworld article about allergy in eyes that might help eg do you have itchy eyes, rash or sinus symptoms to suggest atopic allergy?

            Our ophth says he sees GPC with eyedrop sensitivities. And I've definitely seen bumpy red swellings under the eyelids with eyedrop reaction.

            It's always worth looking at the DEWS Report again, and the American Academy of Ophthalmology clinical guidelines, and get the latest from PubMed and Medscape, for ideas.
            Great reply LM, thank you so much. So much to consider....

            I have cut down as much allergens as possible but could try harder. I use as much fragrance free stuff as possible and simple soap to wash with. On my xmas shopping list is a allergy proof pillow and bedding, maybe this will provide some extra help.

            As for artificial tears, I generally use Blink Intensive Tears which are sodium hyaluronate 0.2% with PEG400. They are PF. I might try switching to a different type for a while, something high quality (any reccomendations?) to see if they eye drops are exacerbating the problems.

            I know my TBUT is shorter than normal from the last appointment but I can see liquid coming out of the MGs. It's not to say they are all working A ok, so I may start up the warm compresses again.

            I saw the SpR at the last consultation, and he called in the Consultant to discuss my case. The first thing the consultant said was 'you know we can't beat this', I think a reference to the allergy, which isn't the attitude i'm looking for. I have no doubt he is a good retinal surgeon, but the problem is in the NHS you get given a consultant who has little interest in what they percieve as a minor ailment. I mentioned restasis equivalent as well and that was basically dismissed as something reserved for severe cases only. My worry is that in a months time, no change, they will try and wash their hands of me I think I need to go in with a plan that if they can't offer anything else that I want a second opinion, how the hell do I do that? Plus, I don't want to be seen to p*ss of what are likely to be my only access to opthalmologist care!

            Comment


            • #7
              [QUOTE=Lacrima;78742]Hi Villfan22,
              Has your optho been able to tell you a bit more about why your eyes are dry and inflamed?
              QUOTE]

              Great point Lacrima. Basically putting it down to allergy, which I don't get. As you say it seems to me that they blitz with steriods with the hope it will improve. I would love them to investigate the root cause, but my impression is my particular optho doesn't have the expertise in this field to investigate further.

              Comment


              • #8
                I need to go in with a plan that if they can't offer anything else that I want a second opinion, how the hell do I do that
                Villfan, You're looking at Referral Pathways. I think referral to cornea service is by high street optician, or GP, or consultant-consultant, or turn up at A&E Eye Clinic looking in a bad way. I think referral pathways are a bit different in Wales so time to investigate. We are going through this confusing Clinical Commissioning Group reshuffle in England. The info should be on your regional PCT (or CCG if you've changed) website, Google 'region+ophthalmology referral pathway' or similar.

                Patient Liaison Service guide us through this and can be excellent. Opticians should know what to do. It always depends whether you find someone clued up and caring - keep asking until you do.

                I totally understand your feelings about not wanting to p* off the only help you've got. But you should be seen by an experienced Cornea consultant. Cardiff School of Optometry might give you good advice after you've had a look at the DrFoster website.

                Really these days I just ask everyone nicely and keep focussed until we get there. We are, after all, pursuing medical services as customers, apparently.

                The docs tell me we should just say 'can we see a cornea specialist?' Like you, I'm thinking how they would react if I did that on their watch. It's possible through sympathetic hospital eye clinic lower staff. It's so much easier in big regional eye clinics where overload and service is more of an issue than territory. I tried it through PALS, the consultant refused, and it was too destructive to the relationship to enable us to attend his local clinic again. Best move I ever made because it turned out he'd misdiagnosed for 1y and failed to refer upwards. Unwillingness to confer, anger and cover-up were signs of his incompetence. You can ask kind staff for advice on the tactful approach and get a vibe on competence. Consultant's secretaries say all they need is a referral letter from GP, optician, other consultant or A&E and they will just book you in anywhere.

                You can even ask Eye Clinic admin direct how to get seen in Cornea Clinic, either office or front desk. Just gently ask advice (be prepared you might get some mean jobsworth ignorant powerfreak who takes pleasure in disappointing people, but keep asking until you get someone kind and professional with a brain). Important to approach them when they're quiet and relaxed.

                These days a GP includes all sorts of random people even in out-of-hours and drop-in services who, although they can be out of their depth and be short of local knowledge, ought to refer into the hospital cornea clinic, depends on configuration of local service and budget holders.

                As you talk to medical staff, especially local opticians (optometrists), you discover this scenario is par for the course. And that docs have reputations, that they're all good at different things, and that people sympathise and are very professionally interested in who's good at what and helping you find the best service (unless they're under contract). If there are problems with a treatment they expect us to turn up again somewhere and say so. But they also expect the GP to be monitoring prescriptions, which doesn't work without ophthalmoscope and knowledge, but good opticians have been very helpful for checks and advice. Whoever prescribes eyedrops should monitor but the hospital eye clinics take risks so it's essential to have local optician backup for basic checks. Optometrists are also immune to budget constraints on GP referral, which have to go through a CCG referral committee.

                Another interesting new opportunity is a Pharmacist with consulting rooms. They are trained to counsel on meds (better than prescribing docs on contraindications, interactions, side effects) and help with conditions and triage. I'm not sure whether they can refer into hospital eye clinics yet - they might have to say 'see a doc today' so you can say at A&E 'the pharmacist advised me to come into eye clinic for checks'. They should have enough local knowledge to know what to do and where to go. If they do, it'll be through their own efforts and desire to serve the community, though, and this has to be appreciated. Some Pharmacists we've seen have been excellent and one originally diagnosed LM! (better than normal GP and Harmoni out of hours GP who blitzed with preservative eyedrops for non-existent allergy and infection) The Pharmacist said 'veins growing across the cornea is not a good sign, this is not normal conjunctivitis, she needs an ophthalmologist'.

                I wish I had gone to a private ophthalmologist for diagnosis right then. We've also been taken in NHS twice after seeing someone in private practice.

                There is virtually no GP training on red eye. The protocol is to blitz for 3m with antibacs or anti-allergy drops (standards with preservatives, normally). See NHS website 'blepharitis' or 'dry eye'. If that doesn't work, consultant ophthalmologist referral. This is why we're better off with opticians who are trained to triage disorders and their regulations dictate they must refer straight to hosp consultant if they find anything (http://www.college-optometrists.org/ see Professional Standards). Also they will by-pass the GP if they think there's infection, especially viral, or a corneal dystrophy. Your point to the GP or high street optician would be 'my eyes are getting worse' and I need to see a Cornea specialist, not Retinal. He's left you with an off-hand comment 'you know we can't beat this' but didn't make clear whether he means blepharitis or allergy or what 'this' is. So now we're wondering whether he knows what he's doing.

                To find an ophthalmologist who can describe what s/he sees and help bring about a spiral of healing, with a feeling of good ongoing support and communication, is the holy grail worth pursuing. Our best scenario has been less top-down prescription, more sharing and discussion, and this makes LM and I feel very happy and safe. Many docs think they want to practice like this but NHS time doesn't allow, but gifted docs and optometrists can achieve this very fast in consultation.

                Then we've always got Moorfields NHS, one referral letter away for 'undiagnosed chronic red eye'. We've got in there by turning up at A&E looking awful, then got referral into Cornea clinic (amazingly, this was the handy email suggestion of a cornea consultant at a well-known eye hospital, and bless 'im for that one). Everyone with unresolved eye trouble deserves at least one trip to Moorfields, unless you've got an equivalent regional Centre of Excellence.

                Moorfields Private is an easy phone call away and could not be more helpful. It's paying for it, that's the trick. One-off consultations for advice have worked for us - docs get all uncomfortable and call it 'second opinion', but d'ya know what, if they're selling and I'm buying they're going to have to get over themselves.

                So it's about taking control really if you can find a way through. I'm thinking your best ally would be a good high street optician who is recently trained or updated. You need them for monitoring vision and advice. They can refer NHS anywhere they dare or know about and with some you can request a specific ophth and they'll just refer it if they think it's right. They are constantly fishing about for info on hospital service for their patients so it might be helpful to find one who attends regional meetings (search something like 'NHS South Wales optometrist board' and compare with optician list on NHS website). And you can talk about the dry eye monitoring and management. Unfortunately, some of them are non-starters and some are excellent, so it needs research. I'd be looking for someone who also teaches and you might find them through the optometry schools. The optometry staff in the hospital would give you good advice if you can find a way of talking to them (I think you work there?)

                The best approach with getting advice from medical staff has been to let them see how bad things are, and to ask the most simple gentle questions as if you knew absolutely nothing about the condition: so what's wrong, why aren't things getting better, what's happened to me, is it safe to use steroids like this, who do you think would know what to do, how can I get more regular eyesight checks NHS.

                Hope this gives you some useful ideas (sorry it's so long, it's quicker to write long than short). The only thing that makes me happy on this is to find medics we like and trust. I know it's not easy when your eyes are bad - can you get a friend or family or hospital colleague to help?
                Last edited by littlemermaid; 22-Dec-2012, 06:01.
                Paediatric ocular rosacea ~ primum non nocere

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