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  • steroids once a day-if not miserable.. doc says i will get cataracts early..

    ok so i have been off and on steriods for about 4 years... the last year mostly on. i was told even if i skip a week that wont help.. that i will develop cataracts early then i would if i didnt take them..l
    well i cant stop.. i am so miserable without them..
    anyone else have to use 1 drop per day? my pressure is always around 10..very low..never goes up...
    i do get glaucoma evals.. am good on that..
    i am 37 years old. have sjogrens mgd ocular rosacea & my eyes are just bone dry and inflammed daily even
    while wearing my special zienna sunglasses....

    i know others that continue with the steriods cause its like be miserable and dont get out of bed and live now ..
    any suggestions..also i have tried sclerals-not at BFS but they irritated my lids so bad..... couldnt wear them..

    anybody else in my predicament?? i know all meds have side effects... i also use restasis and lacriserts..have tried blood serum...

    also i take high doses of fish oil.. tried the special diet where i ate basically nothing.. didnt help...
    Jenny

  • #2
    Jenny-

    I had a detached retina (and has surgery under the knife) back in 2001, and then was on
    steriod drops steady for almost 3 years, 3 times a day. I kept getting Iritis eye infections
    off and on all the time, which was not good. I would end a treatment of a few weeks quit,
    then a few week later it was back.

    I was stepped down to what they call AllRex which is milder and not considered a steriod but does
    the same job. I was on those for another 2 years, off an on. Now I'm done with all of it
    hopefully for good.

    Today I have an emergency bottle on hand if i need it, my eye doctor lets
    me be the judge if I feel symtoms coming on. I know what to look for.
    My biggest problem now is dry eye since my operation.

    But I would say 10 is not bad pressure. Taking steriods will raise them very high
    over a long period of time. But, one drop a day should not affect you much. At times I
    was at 20 - 25 presure in my detached eye.

    Of course i'm not a doctor and can only speak to my own experience. So ask your doctor
    to be on the safe side and see if there are any substitutes that might work
    out better for you in the long run.

    Good luck!
    My Dry Eye Story:
    http://www.dryeyezone.com/talk/showt...7575#post47575

    Comment


    • #3
      thanks msny.. sorry about your retina.. that sounds so painful yikes..
      yes i have had other docs who are fine withme taking it once a day... i tried the non preserved tpe
      of fml but it did nothing... i will just tkeep it to once a day or less.. hopefullly something will
      give and i can quit it..there were times i didnt use them for months.. i know what u mean about
      having a bottle on hand..thanks for your reply.
      Jenny

      Comment


      • #4
        I feel like I am in the same boat.
        My eye inflammation is AWFUL!
        I think it's partly b/c my doctors are not treating me right, but I do know my eyes are very inflamed. My eyes are usually fine during the day, but once it's past maybe 5pm and on. No amount of drops will help my dryness and inflammation.

        The ONLY thing that does help are the steroid drops. One of the cornea associates I saw ( I had to see someone I usually don't see but my main one wasn't there) told me that I can do lotemax 1x a day, every other day. She warned me that the more you put the drops in the more your eyes want it/ crave it. She also warned me about the redness that happens after steroids. She says as long as we moniter my eye pressure, using the lotemax long term will not be a problem if used sparingly.

        I haven't tried Lotemax yet, I've been using Flarex.

        What I have been doing is only using the drops when it is only necessary, such as when I go out on the random nights with friends (which is seldom) or if I have really bad flare ups (but that is every day haha!) I may start doing them Mondays, Wednesday, and Fridays...the days I go to school...I use my drops less when I am on them so that might help me through classes so i wont be distracted with putting drops in when I am trying to learn! and then Use them on the weekends only if I go out on the town or something.

        It's just hard. I am 22 and these are supposed to be some of the best years of my life, but instead I am self concious, depressed, and try to stay inside most of the time. It's awful. What makes me made is my boyfriends sometimes will tell me "I think you like to be miserable like this, I think you want your eyes to be red all the time" .... THE H#@! I don't!! I'd LOVE to be able to live a life where I don't have to worry about my eyes and spend so much on drops and the PAIN, who wants that?!

        Comment


        • #5
          What eye doctors seem to be taught here in Australia, from what they've told me, is that it's better to use the steroids several times a day until your eyes feel really good, then taper off. I think this makes good sense, assuming you are able to tolerate a period of no steroids for a time at least until your eyes get really bad again. Inflammation is a vicious cycle where the inflammation makes your eyes dryer causing more inflammation. If you can get the inflammation under control with a steroid several times a day for a few weeks, then you have a much better chance of keeping things under control with your usual routine. One drop of steroids every day or so is going to take the worst edge off your inflammation but it can't stop the vicious cycle. I would also ask your eye doc how much inflammation they see and where it is (eyelids, cornea, conjunctiva etc), if the doc can't see much inflammation clinically then maybe you are doing the wrong thing using steroids. Whereas if your corneas are chronically inflamed, it's much more justifiable medically.

          Comment


          • #6
            Jenny2008, Where we hang out children are on steroids permanently to prevent immediate damage but we are trying to minimise use. Msny's experience is hopeful.

            Absolutely agree, Poppy. Pulse and taper is what we do, and amazingly we can maintain in remission on PF steroid 2 drops/week - especially if we do well on the normal mgd treatments like warm compress and diet and occasionally a course of topical antibacterial, depending what's happening (can't use oral). Our eye flareups are obviously caused by rosacea skin flareups, but maybe other people could maintain on minimum steroids like we do in remission.

            I've seen different theories about cataract risk - length of time v amount of dose v penetration beyond eye surface in chronic use. I read the intraocular pressure should be checked before 6 days after starting steroid eyedrops in case of reaction (registrar had read this too) - never had a doc do that, they seem to rely on the fingers-crossed/it's rare method and check at next appointment. So it makes sense to see an independent optometrist to check IOP.

            My eyes are usually fine during the day
            Vivian, We have to use more than 6 tear substitute drops during a normal school day to maintain the eye surface, which has reduced sensation - but in airconditioning she would use loads more for safety - are you using enough through the day? Do you think that maybe after the nerve damage of surgery, the eye surface doesn't warn you enough?

            We use normal saline 0.9% Minims vials + a drop with hyaluronic acid maybe 1 or 2/day, more of the HLA tear substitute eyedrop if things are bad. Using mostly saline, but frequently, helped improve the eye sensitivity reaction to eyedrop chemicals and reduce inflammation. We have more tearing and less mgd than she did on eg Celluvisc in frequent use. By mgd, I mean no signs of meibom, whereas now, we are more likely to see it when we look for it.

            But we have had to really think about and get in touch with what helps/makes things worse ourselves, and read up like you're doing, as well as talking to the docs.

            Have you got sealed wraparounds to wear in the lab? Presumably it's very very dry because of the a/c. Many hospital medics are telling us they have to use eyedrops through the day, especially the ones like optometrists who can't leave the treatment rooms and work long hours in there without windows.

            I often think that if the less empathic and mutual support-minded docs/parents/partners had to deal with this, they'd be in a right state. If anyone's got a problem with an ophthalmologist, try asking how their eyesight is, they're microsurgeons. We are finding some family treat the suffering as an inconvenience to them at first. Testing times.

            Many docs/triage staff just get angry. This is LM's greatest fear now about going to consultations, that 'the doctors will be angry' and 'they are thinking I'm wasting their time'. She is even told 'it's rare' meaning there's no point. Poppy knows all about this.

            This is why we seek out supportive people wherever they are. At least, these eye conditions are more recognised, supported and treated these last few years. Thanks to Rebecca and some good docs.
            Last edited by littlemermaid; 17-Aug-2012, 07:13.
            Paediatric ocular rosacea ~ primum non nocere

            Comment


            • #7
              i use the ziena sunglasses with shields--they block in moisture... my doc acted like skipping a week here and there wouldnt help... he also said everyone gets cataracts eventually.. he is just that way..
              anyway, i am miserable if i dont tae a drop. hopefully when the weather stays more stable i can get off them for a month or longer.i have before...

              yes i have a lot of inflammation and like i said i do warm compress, massage. doxy, restasis. anti inflam diet.. everything...i hvae sjogrens and mgd so its hard... i just have to do the best i can.. it is so easy for someone who doesnt go thru this to say try adn get off steriods.... sometimes we have to take things until we get a bit better-side effects with everything...
              thanks for all the support everyone. i also use non preserved drops.. cannot tolerate a preservative.

              i also use lacriserts-but they only help for so long-if my eyes are too dry they dont melt properly...
              Jenny

              Comment


              • #8
                littlemermaid
                what kind of drops does she use with hyaluronic acid??? maybe they arent here in the US? and you use reg saline??? can you elaborate..what does this do?
                Jenny

                Comment


                • #9
                  i have never heard of redness after steriods?? vivian.... what does your doc mean? maybe the ones with preservatives... ? who knows..all i know is every doc has his/her own opinion and they all very!!!!
                  Jenny

                  Comment


                  • #10
                    Jenny, do you live close to minneapolis? Philips Eye Institute in Minneapolis compounds pred-healon (.001% steroid + .25% hyaluronic acid). Few days back, I was prescribed this medicine 4 times a day for a month by a doc at north west eye care in minneapolis. I am feeling better now and hope it breaks the inflammation cycle.

                    healon is widely used in usa for after surgeries etc., to help heal cornea. you just need to find a good doc with right information and willing to try different things.

                    Comment


                    • #11
                      Jenny2008,
                      http://www.dryeyezone.com/talk/entry...660#comment660 Here's a useful study Rebecca posted in the blog 'To compare the safety and efficacy of hypotonic 0.18% sodium hyaluronate solution (0.18% SH) versus saline and versus 0.3% carbomer for the treatment of signs and symptoms of moderate dry eye syndrome'.

                      And 'Hyaluronic acid is a viscosity agent that has been investigated for years as an “active” compound added to tear substitute formulations for the treatment of dry eye. Hyaluronic acid (0.2%) has significantly longer ocular surface residence times than 0.3 percent HPMC or 1.4 percent polyvinyl alcohol. Some clinical studies reported improvement in 44-48 dry eye in patients treated with sodium hyaluronate-containing solutions compared to other lubricant solutions, whereas others did not. Although lubricant preparations containing sodium hyaluronate have not been approved for use in the US, they are frequently used in some countries.' DEWS Report p107 in Management and Therapy section, which is essential reading. http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

                      HLA drops seem to be available in US and an interested pharmacist might find out where - here's Gary Foulks on this http://www.eyecareeducators.com/site...ar_surface.htm

                      Not necessarily the holy grail of eyedrops though if you can't find them. You know how it is. Just another useful option. We use Hylotears, but there's plenty more manufacturers like Thea Pharmaceuticals in France, with preservative-free dispenser.

                      We are using normal saline eyedrops, sodium chloride 0.9%, easily available in little vials from any pharmacist, for a frequent drop close to tears without harm. Supposed to be the correct osmolarity so not stress the surface. What any doc would use to flush an eye. Some sensitive people here like them. There is no viscosity though and they disappear fast.
                      Last edited by littlemermaid; 17-Aug-2012, 12:21.
                      Paediatric ocular rosacea ~ primum non nocere

                      Comment


                      • #12
                        Originally posted by littlemermaid View Post
                        Vivian, We have to use more than 6 tear substitute drops during a normal school day to maintain the eye surface, which has reduced sensation - but in airconditioning she would use loads more for safety - are you using enough through the day? Do you think that maybe after the nerve damage of surgery, the eye surface doesn't warn you enough?

                        Have you got sealed wraparounds to wear in the lab? Presumably it's very very dry because of the a/c. Many hospital medics are telling us they have to use eyedrops through the day, especially the ones like optometrists who can't leave the treatment rooms and work long hours in there without windows.
                        TheraTears are the only PF drops that I use and are the only ones that really comfort my eyes, I have to use them about every 15 mins. I feel like I am using them enough. I usuaslly go to work about 2 or 3pm. I am at a computer till about 5pm....after 5pm I am back in the lab processing specimen. It's hard to get drops in every 15 mins b/c of the deadlines we have to make....and I guess it doesnt help with the a/c being either. I'm trying to find goggles though ahah.

                        I will confess. I have not been consistent with fish oils, vitamins, and doxy. Doxy is a hit an miss with naseua....

                        I will say this: when my eyes are super inflamed my inner lower eyelids are super red....does anyone kow what that means?? when they are not inflamed they are a healthy looking pink.

                        Comment


                        • #13
                          no i live far from minnesota..
                          and how strange... Dr. Foulks was my corneal specialist until he retired last year...
                          Jenny

                          Comment


                          • #14
                            Originally posted by jenny2008 View Post
                            i have never heard of redness after steriods?? vivian.... what does your doc mean? maybe the ones with preservatives... ? who knows..all i know is every doc has his/her own opinion and they all very!!!!
                            She said something that like with any other steroid (eye drops or shot), the more you use it, the more your body (or eye) will want it. When you finally stop it, taper off, etc. the body (eye) will become very "angry" b/c it wants the steroids, b/c it's gotten so used to it. which is why it may get even redder because it craves the steroids in a sense.

                            I'm not sure if its pretaining to just drops with preservatives. She was telling me this while handing me a bottle of lotemax.

                            Comment


                            • #15
                              ok thanks vivian... i will ask my doc about this... i know they all have their own opinions... so frustrating!
                              Jenny

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