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safety of lotemax long term?? what do your docs say??

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  • #16
    nope, FML is NOT loteprednol. It is fluorometholone. Much worse than lotemax to use long term. Leiter's has lotemax I think in a 0.25% -- with either preservative free or a lower preservative. I don't know why to bother with steroids as they'll lead to glaucoma or cataracts long term... it's not worth it

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    • #17
      http://www.fda.gov/Drugs/DrugSafety/.../ucm111085.htm
      Let us not be naive about steroids and immunomodulators. Time to get informed and understand risk for ourselves.

      With docs, I often think: 'would you do this yourself?' 'what would you do with your own family?' 'are you not telling me something?' 'are you in denial about future problems because you know you'll be long gone?' 'why are you not telling me clearly about side effects and risk?'

      We have been using various steroids chronically almost 5 years - Prednisolone, FML, dexamethosone - and we still have keratitis from meibomian gland dysfunction from unresolved rosacea skin problems. In flareup, we've used frequent steroid drops, then tapered to very very little. Until the skin causes are improved, we've had to maintain the eye surface and inflammation, and used antibacterials and frequent lubricants (had reaction to oral meds). This is the skill.

      In long-term follow-up, there can be misunderstanding, self-managing and unresolved on the same treatment protocol 'next patient please', unless we ask the difficult questions and agree, see another doc for advice, or do the research.

      These questions about eg steroids upset docs who want to keep their head in the sand, particularly about how informed patients are now - really we would all be happier talking about risks and benefits together. We are paying docs, one way or another, to inform and advise us from their experience and professional knowledge.

      We just need these eyes to last a lifetime, preferably comfortable. So please, guys, ask the eye docs the difficult question - 'what's the risk?'
      Paediatric ocular rosacea ~ primum non nocere

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      • #18
        Originally posted by Nikki View Post
        nope, FML is NOT loteprednol. It is fluorometholone. Much worse than lotemax to use long term. Leiter's has lotemax I think in a 0.25% -- with either preservative free or a lower preservative. I don't know why to bother with steroids as they'll lead to glaucoma or cataracts long term... it's not worth it
        you are correct-after i posted this i looked at my bottle -it is fluomethelone.. and i ended up looking up alrex and its a safer form of lotemax however i cant use the preservative free as its still made from the powder.....

        FML is much safer than lotemax and alrex (according to every doc and corneal specialist i have been to) as it doesnt penetrate past the surface of the eye.... all my docs have told me this as well as the compounding pharmacists at Leiters... FML is so weak tho -it doesnt help at all..if i use a little lotemax ointment i find relief-therefore i do know its stronger-while it is a "soft" steriod it still has risks and complications and itsnt meant long term.. thanks for the info... the preservative free lotemax at Leiters still has a bit of preservative in it as it is made from the powder form of lotemax (this is per the pharmacists there) so i cannot use it... fml is the weakest and safest however it doesnt help me so i wont bother with it...
        Jenny

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        • #19
          So do you try to keep your daughter off of them as much as possible.. I am just hoping to get throughspring , summer and fall.. allergies are so bad-i basically live in the south-10 minutes from the south where the allergies are the worst with pollen , etc.. i am hoping the Cromolyn drops and Singulair i am taking will help a bunch.. and also i do warm compresses-does your daughter as welll?? i am thinking with allergies maybe i should do those at night when the pollen count drops etc --as i wake up with itchy eyes a cool compress may be better in the am???

          good luck for your daughter.. i just hate this.. i now have a doc who doesnt want me on steriods at all-at first i got mad-but now i am glad that he is so concerned and is being honest about side effectsforthe future.


          Originally posted by littlemermaid View Post
          http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProvi ders/ucm111085.htm
          Let us not be naive about steroids and immunomodulators. Time to get informed and understand risk for ourselves.

          With docs, I often think: 'would you do this yourself?' 'what would you do with your own family?' 'are you not telling me something?' 'are you in denial about future problems because you know you'll be long gone?' 'why are you not telling me clearly about side effects and risk?'

          We have been using various steroids chronically almost 5 years - Prednisolone, FML, dexamethosone - and we still have keratitis from meibomian gland dysfunction from unresolved rosacea skin problems. In flareup, we've used frequent steroid drops, then tapered to very very little. Until the skin causes are improved, we've had to maintain the eye surface and inflammation, and used antibacterials and frequent lubricants (had reaction to oral meds). This is the skill.

          In long-term follow-up, there can be misunderstanding, self-managing and unresolved on the same treatment protocol 'next patient please', unless we ask the difficult questions and agree, see another doc for advice, or do the research.

          These questions about eg steroids upset docs who want to keep their head in the sand, particularly about how informed patients are now - really we would all be happier talking about risks and benefits together. We are paying docs, one way or another, to inform and advise us from their experience and professional knowledge.

          We just need these eyes to last a lifetime, preferably comfortable. So please, guys, ask the eye docs the difficult question - 'what's the risk?'
          Jenny

          Comment


          • #20
            I'd encourage everyone with allergies to look past the eyes -- and, consult with an ENT - or whatever specialist that you think would be helpful. To illustrate: I have been getting allergy shots for outdoor (i.e. ragweed, grass, trees) along with indoor (mite, mold) for 3-4 years, and never got better. saw an ENT and he said my nose is all jacked up. Deviated septum (which I knew), along with 2 other problems. Allergy doc never suggested treatment for my nose - he was too specialized, or didn't look outside his narrow focus of expertise. Cross-disciplinary care and an open mind is so important. With chronic dry eyes and allergies -- you HAVE to be the one that's pro-active, and questioning your medical doctors. Otherwise, you could be overlooking another problem in your body that is compounding the existing problems.

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