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whats the longest time you've ever been on steroids?

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  • whats the longest time you've ever been on steroids?

    At the time of my next scheduled appointment I will have been on steroids several times every day for over 5 months. Currently on pred 4x a day. All these steroids have resulted in my eyes being kept at a bearable level (they certainly don't feel good though), and only a small clinical improvement from what I can gather.

    Is it normal to have to be on steroids for so long to control inflammation?

    I am seeing a new eye doc soon, and I really hope they have something to try other than just endless steroids. The steroids are the only thing that keeps my life bearable, but I can't be on them forever...

  • #2
    I have been on Lotemax twice daily for a couple of years. It is the only thing that keeps my DES tolerable. I am watched very carefully for glaucoma while on it. I see my doc every 6 months for interocular pressure (IOP) checks and retinal nerve fiber layer scans. Make sure your doc is checking your IOP at every visit as the steroids can cause steroid induced glaucoma.
    Every day with DES is like a box of chocolates...You never know what you're going to get.

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    • #3
      Originally posted by kitty View Post
      I have been on Lotemax twice daily for a couple of years. It is the only thing that keeps my DES tolerable. I am watched very carefully for glaucoma while on it. I see my doc every 6 months for interocular pressure (IOP) checks and retinal nerve fiber layer scans. Make sure your doc is checking your IOP at every visit as the steroids can cause steroid induced glaucoma.
      Thanks Kitty, what is the purpose of the retinal nerve scan? Is it something that is supposed to be done during long term use of steroids?

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      • #4
        Degeneration of the retinal nerve fiber layer (portion of the optic nerve) is one of the earliest indications of glaucoma. It occurs long before visual field loss or other vision impairment and in the latest stages, blindness. The scan is used to determine if the retinal nerve fiber layer is degenerating/being damaged. If it is, treatment (discontinuation of ophthalmic steroids and/or initiation of glaucoma medications etc) can be implemented to stop the damage early before visual field loss can occur. I have a scan every year (more often if my IOP increases) and IOP checks every six months.
        Every day with DES is like a box of chocolates...You never know what you're going to get.

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        • #5
          I have had to go off all steroid drops due to increase in eye pressure. This can lead to glaucoma. I am currently on FML ointment, which is a steroid.

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