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adverse effects from FML

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  • Gerri55455
    replied
    Hi DL, still using the 20% serum. Progress is slow BUT for the first in the last year (since the FML irritation began) serum has enabled me to sleep the night through: severe corneal neuralgia was killing me. After reading from people on DEZ who are using 100% serum and finding it more effective, I went back to see my eye specialist today to ask if he would consider prescribing 100% serum. He says there is no proof that this would work better than 20%. I will look around the State to see if I can get another specialist to prescribe a higher serum concentration. There are times (like now) when I feel as if I'm stagnating. Then there are times when I feel that I am making progress. What is sure is that for now, this is the only thing that has helped. I would really like to get my eyes to where they were before FML. They were dry alright and were getting worse with time and too much computer use. But this gritty, itchy, highly photophobic soreness that FML brought is thoroughly undesirable. And how are you doing? Have you begun the serum? Best, ~Gerri

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  • DryLondoner
    replied
    Gerry, are you still making good other on serum? Did help with comfort and redness?

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  • Gerri55455
    replied
    Thanks so much DryLondoner and littlemermaid for responding. ~DryLondoner, my ophthalmologist at a university hospital in the US insists that there is no way I could stil have side effects from FML, months after stopping the drops. I am 100% certain that they worsened my condition. Now, when I use warm compresses, the irritated areas (which were never there before) become extremely red and inflamed. I have details my suffering these past few months in a thread: http://www.dryeyezone.com/talk/showt...inging-persist!

    Good luck to you too, DryLondoner, and if you find a solution. Please share! Thanks.

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  • littlemermaid
    replied
    We have used tapering courses of FML 5y from the children's hospital because there is less incidence of IOP (intraocular pressure) rising (PubMed) but used dexamethosone in tapering dose after a nasty flareup infection because it is the only PF (preservative free) steroid easily available NHS or even Private. I still feel more comfortable with FML because the incidence of sudden IOP rise for dex is 1/8 (PubMed). If we had compounded PF FML I would've used that but couldn't achieve it UK a few years ago. The problem with FML is the BAK (benzalkonium chloride) but docs are compromising... Obviously there's a long-term cataract risk (unstudied so far) and that's why we wanted to be tapered off it ASAP the surface inflammation was down. Moorfields said 'use cyclosporine as a steroid-sparing agent'. I can do PubMed links later but I have to cook the dinner...

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  • DryLondoner
    replied
    I get so angry when I read these threads - I have been given steroid drops by two very prominent ophthalmologists (at Moorfields and St. Thomas') and neither mentioned tapering or rebound inflammation - why do patients and friends know more about the effects of drops/treatments on the eye than the pros? It really is awful.

    I got dryness over night when using both and when I asked if I could stop they said it would be fine. I definitely felt worse afterwards and when I mentioned this to them, they both were very adamant that there was not reason and no way the drops could have made things worse.

    Off to Google Scholar to find some studies and do some printing. If they don't find me annoying already they sure will pretty soon!

    Gerri - I've been off them for almost 2 months and no joy. I guess once they cause the inflammation the vicious dry eye cycle has been initiated and it's about finding a way to get that under control for long enough to enable your tear film to return to "normal".

    Good luck!

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  • Gerri55455
    replied
    Hello, whyme? I really would like to know whether your problem resolved for good. I've had the same problem with FML and it won't go away. I just don't know what to do!!! Thanks so much for responding. ~Gerri

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  • Guest's Avatar
    Guest replied
    I live in Dubai where all the water is desalinated (taken from the sea) and the effect on skin and hair is horrible. I go to extreme lengths in trying not to let it enter my eyes.Water quality definitely affects eyes, skin, and hair.

    Also, currently the temperature in the shadow here is 45 Celsius. I think that even in hell the climate must be cooler! It is impossible to get in my car before running the air conditioning at full blast for about 20 minutes. The sun is relentless and I wear polarized glasses all the time. Also, inside the buidings the air conditioning is on veeery high. This is extremely challenging for my eyes.

    Steroids are one of the things that have saved my eyes and vision from severe ulcers and erosions and have given me my life back. However, some people have sensitivity towards different steroids and/or other ingredients in the drops. In clinical trials and postmarketing experience dry eye patients have responded well mostly to Lotemax, Alrex, and unpreserved methylprednisolone. However, even with these "refined" steroids, the dangers to so-called steroid responders might outweigh potential benefits. Eye pressure must be monitored, and careful tapering of the drops should be done before quitting them.

    Despite their potential for adverse events in the long term, steroids are sometimes necessary if not indispensable for saving one's eye from severe inflammation. For example, if I did not take steroids during my episode with the ulcers in my eye which were covering almost my entire field of vision, even if I had healed, my eyes would be covered with scars and my vision severely impaired. Steroids prevent corneal scarring (on the other hand might slow down healing, but better slower healing than faster with scars). So when one's eyes are severely inflamed or covered in vision threatening erosions steroids become a necessary medication, just like chemotherapy becomes necessary in cancer and autoimmune diseases.

    Tonight I am travelling to Paris for 10 days to see my mum. There is a river there as well, and the weather is cool and nice. I will see what difference all this makes to my eyes. I hope that after my poor eyes have a 10 day break from the desert summer they will be improved a lot.

    The only thing i worry about is the flight-- it is too long and the air in the airplane is just awfully dry. Every time I fly my eyes get a worse blow than they do even with the weather here. If i need to, I will put a steroid drop in each eye after the flight that will prevent the start of a post-exposure to adverse environment inflammation cascade

    I hope you find the right antiinflammatory medication for you! Talk to your doctor about immunosuppressant drops like cyclosporine (different preparations result in diferent sensitivity reactions). Heard that cyclosporine in liposomes is best tolerated, followed by the Moorfields type-- 2% in corn oil. Other preparations sting and burn usually. Hopefully your doctor will be helpful and compassionate and guide you through the porcess of finding what works best for you.

    Good luck

    Dani

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  • littlemermaid
    replied
    Phew. You had me worried there - always been uncomfortable with steroids even tho they saved littlemermaid's vision. Water and environment effect on skin and eyes very interesting. Ghastly to consider what's in Thames water. Could be air conditioning at work?

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  • whyme?
    replied
    thank you for your replies!

    over two weeks after stopping FML eyedrops - my eyes are finally getting back to their normal dry eye state!

    the recovery was quite odd - I went to see my sister in worcester (i've never been before) on tuesday. My eyes were horrific - i'd taken another week off from work due to how bad they were. On wednesday my eyes felt significantly better and were not red at all for the whole day and i only got some marginal dryness very late at night.

    it is now thursday and my eyes feel very comfortable - i dont even notice them.

    Littlemermaid - I think I might agree with you about the Thames Water. The water in worcester is soft, whereas the water is hard in my part of london.

    It is now thursday evening and i've just got back to london. I will monitor my eyes to see if london water makes a difference to the comfort of my eyes.

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  • littlemermaid
    replied
    When she had rebound inflammation from insufficient tapering of FML, eyes were red within 2 days - a flare up, didn't improve until back on FML. Same effect on Chloramphenicol but immediate - burning, red eye, improved fast. If A&E didn't check your IOP, must do it asap (independent optometrist?). Most emergency registrars we've ever seen look as if they are hiding their panic, faking, or keen to get home (absent consultant syndrome).

    UK ophths do not tell us enough detailed information about tears, tear film, meibomian glands, under lids, what they see on eye surface. Where is the info you need about your tears? I resorted to paying private optometrist so I could have a look myself on screen linked to ophthalmoscope when eyes were bad and get photos for history (very useful, get .jpg emailed to you).

    Is now the time to ask GP for NHS referral eg Moorfields, Western Eye Hospital, John Radcliffe (while eyes are bad) then you've got long term follow up and history in one place?
    Last edited by littlemermaid; 12-May-2010, 03:17.

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  • whyme?
    replied
    i saw a registrar at A and E. He said don't use any more steroids in my eyes. I had previously used prednisolone minims for 10 days - but had an adverse reaction to those and one day after stopping them my eyes went back to normal.

    the registrar suggested celluvisc - i have used those in the past and they provide 20 minutes of relief but my eyes often feel drier after those 20 minutes.

    last night my eyes were on fire - the burning was intolerable - i put in some celluvisc and that made them feel better, but i was putting the celluvisc drops in every 20 minutes.

    it has been a week since stopping the fml, and my eyes have yet to go back to normal - but i have my fingers crossed! admittedly, i am beginning to panic and the fact that my eye doctor has yet to get back to me is certainly not helping!

    i am concerned about rebound inflammation - i was putting 1-2 drops three times a day for 14 days and then stopped. how does rebound inflammation present and how is it treated? I am terrified of trying new steroid or new drops. thank-you for your reply - it was very comprehensive!

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  • littlemermaid
    replied
    Is it preservatives causing damage? do you get relief on single use unpreserved bland drops like Celluvisc? Is it FML rebound inflammation from stopping without tapering (how many a day were you)? how can this be blepharitis (A&E duty ophth or registrar)? It seems docs are not clear whether your meibomian glands are working or not?
    Has JD suggested drops with hyaluronic component (supposed to help restore eye surface)? I am thinking it is as if your poor eye surface is wrecked. Have you got a small file of notes with your history in to show people?

    When no eyedrops are working, NHS supply autologous serum http://www.nhsbt.nhs.uk/tissueservic...ngle_pages.pdf. Ophth has to feel they have tried everything else so you would need to emphasise history, get previous ophth notes sent to consultation, otherwise they don't like considering history with other ophths even if it's years.

    I'm taking this Christophe Baudouin research abstract to our next consultation http://www.dryeyezone.com/talk/showthread.php?t=11167 I have seen littlemermaid's eye surface and tears change after sodium cromoglicate from spattering to dry (misdiagnosed as allergy), then flare up burning on Chloramphenicol. A humidifier (Argos) on full time might help until he gets back from his hols, then see what he thinks (or see Frank Larkin now). I am so sorry you are suffering like this.
    Last edited by littlemermaid; 12-May-2010, 03:23.

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  • whyme?
    started a topic adverse effects from FML

    adverse effects from FML

    I have dry eyes (TBUT 2/3)) - itchy eyes, red eyes, mucin, tearing, eyelash loss, gritty feel.

    I have had these symptoms for one year, i dont have blepharitis, but it is though that i have inflammation due to either ocular rosacea or allergies.

    I have used a tetracycline antibiotic ( same family of drug as doxycycline) for several months - no improvement.

    14 days ago i started FML drops, the doctor thought that once the cycle of inflammation had been halted, then my dry eye would improve. He prescribed the FML for two months.

    i started experiencing severe dry, sore and painful eyes with FML. so i stopped using them, 6 days ago. However my eyes are still the same and have not recovered from the adverse effects. My eye doctor is on holiday and cannot help.

    the pain affects me at night aswell as during the day. I find it hard to keep them open. For the first time in my life - I am wishing for my OLD DRY eyes, i want them to go back to at least baseline. with my old dry eye - the dry eye was frustrating, and uncomfortable but it would never wake me up from sleep or cause such pain. in addition, my eyelid margins are sore and irritated.

    I went to Moorfields A and E last night, they ruled out anything serious. but frankly, they were of no help. I have never been to A and E for anything and have never seen a doctor for an emergeny appt for my dry eyes - the side-effects of FML have been so bad for me and have pushed me to A and E. I felt ashamed when after a 3 hour wait, they told me its blepharitis and were about to prescribe me some artificial tears (i told them not to bother since i have every articfical tear drop on the UK market).

    I am very concerned that these effects may be permanent, i thought i had it bad, and would usually have really dry eyes at the end of each day an dfist thing in the morning, but know i have that feeling and more 24 hours a day.

    please, for those of you who have tried FML or any steroid and had a bad reaction - did you recover? did you at least go back to baseline?[/B]

    I wish i had never used them, i had been prescribed FML eyedrops months ago, when i first got diagnosed, but i didnt use them because in my opinion they were simply like putting a plaster on something, not actually treating the underlying cause and i was cautious about the side-effects. I wish I had stuck to my gut instinct.

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