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  • I need advice on steriods

    Hi everyone,

    I'm going through a really rough patch and I'm not sure what to do. I started having problems about 6 weeks ago, and went on Zylet 2X a day for about 2 weeks, the inflammation was still no better, so I saw my doctor and was prescribed Lotemax 4x a day. After two weeks with no improvement, I went back and now she has me on Pred Forte (supposed to be stronger steriod than Lotemax) 4X a day, Xibrom (NSAID) 2x a day, and Restasis 2x a day (just starting this off). After a few days on that, I'm still struggling. My right eye has calmed down a bit over the last week (still drier than normal, but manageable), but I'm very concerned about my left eye. It feels drier than it has ever felt to the point where my vision is suffering. My upper eye lid aches terribly and just scrapes against my cornea every time I blink. After over a month on steriods and still pain in my left eye, I'm not sure that steriods are the answer, and now my doctor has thrown the other prescriptions into the mix, I don't know what to do. I've only seen this doctor a few times (my old doc left town), and I've voiced my concern with the treatment, but she insists she knows what she is doing and wants me to stick with it another month.

    My question is this - If after a month on steriods I have not made a significant improvement in inflammation isn't it safe to assume that a steriod is NOT going to help me and maybe something else is going on? Or is it all of a sudden going to kick in after all this time? I hate to keep taking them and putting my eyes at the risk of side effects if they are not helping. I have had several flare-ups over the years and I always feel better after a week or so on Lotemax 2x a day, so I don't know what is different this time, and I don't know what to do about it. Also, my left eye is SO dry and SO achy in my upper eyelid that I'm even wondering if somehow all these prescriptions are making things worse. If anyone has any advice or similiar experiences, please let me know.

    Thanks,
    Shells

  • #2
    My gut is telling me that after a month on the steroids, you aren't likely to see an improvement. For whatever reason, this time around the steroids just don't look like they'll do it. (That does not mean they won't help next time.)

    What do you have to lose by taking a break? Perhaps there is something in the mix that is aggravating the situation.

    Don't take my word for it. See what other people suggest to you. I have very little experience with steroids and did not see an improvement when I tried them years ago.
    Never play leapfrog with a unicorn.

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    • #3
      Agree..

      I agree with Diana. If I have to use steroids, I see a response in 2-3 days. I usually can see the reddening inside my lower eyelid when I first start along with the veins being more prominant in the white of my eyes. Steroid will make this calm down for me 2-3 days into treatment.

      Have they considered Blepharis? (think I spelled that right. Correct me if I'm wrong someone) Can't read anymore tonight.

      Billye

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      • #4
        Hi Shel-It sounds like the doc is stepping up the steroid drops and this is similar to what my doc has done with me. Is the Restasis NEW to the whole scene for you? I think you indicated this.

        Now docs are prepping patients by putting them on steroids prior to starting Restasis many times. This may be two weeks, or it could be more if they are trying to fix you with the minimal strength med. Are you using Restasis in both eyes? Try some cold compresses over your sore eye in the a.m. and p.m. When are you seeing the doc again? Since you're so dry, it's probably important to use your favorite tears in that eye on a regular basis, too. I know if I'm using Pred Forte or similar, it's kind of sticky and I need to use TTears or NutraTear to cut the stickiness. I'd give it another week or two before throwing in the towel--and instead see the doc.

        PS. Let me know if you'll be using Restasis.

        Lucy
        Don't trust any refractive surgeon with YOUR eyes.

        The Dry Eye Queen

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        • #5
          Shells,
          I am so sorry you are going through a rough patch... Wish I knew more about the steriods... the Dr. I saw in Rochester,NY told me to stop worrying about it when I was using them because he had patients on them for months at a time...but I was worried like you are and its difficult to decide whether to hang in there or not. The one thing Dr. Latkany did stress when I saw him was to use cold compresses and not warm for inflammation. Have you tried this for the eye that is sore and achy? Think of you often and hope this resolves itself soon. Peggy
          Last edited by Peggy; 08-Jan-2008, 23:06.

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          • #6
            shells,

            Maybe steroids just don't work for you. One doc I saw put me on Pred Forte for a month and checked my occular pressure weekly. Apparently I'm not a "steroid responder" meaning my eye pressure doesn't increase with steroid use (which can cause glaucoma and cataracts). However, the steroids didn't do anything for my dry eye/bleph/mgd whatever you want to call it. If you aren't seeing results I would suggest giving steroids a break because you aren't receiving the intended benefits but you are risking the potential side effects.

            I think silverlady was referring to blepharitis - which is just a general term for inflammation of the eyelids - it may be a result of other eye conditions such as mgd or may even be the cause of your dry eye. Who knows, this whole field of eye disease is so convoluted

            Comment


            • #7
              I am currently using Pred Forte for my Uveitis - don't like the stuff as it messes with the way everything tastes, and does tend to make my eye dry out more.

              However, it's quick acting stuff for me - day or two at most and I'm feeling mostly fine. However I need to keep taking the damn stuff for about a month to stop the flare-up resurfacing.

              It does contain benzalkonium chloride though, which I know people on here aren't a fan of for long term (or short) use. If they are trying to use it to counter a DE related issue, I would question it myself.

              Comment


              • #8
                Thanks so much everyone for the responses. You guys are the best.

                Billye - Yes, in addition to my lasik induced dry eye I have blepharitis. The doctor also told me to start warm compresses and had me start all kinds of supplements. I just feel like I'm trying too much new stuff at once to know what is and what is not working. You mentioned the color of your lids, and they way you describe it has ALWAYS been how I have responded in the past to steriods. This time around though, only occassionaly I'll notice the whites seem whiter and my lids seem less red. The doc said Friday I was still inflamed, so not sure what is going on. Like I said, right is more comfortable, left is just awful though, and it's a different kind of awful than usual which is what concerns me. It is just terribly achy, and it feels like my upper eye lid is just scabbed over or something.

                Lucy & Peggy - Yes, cold compresses, that is what I thought. I told my doc I did not want to do warm compresses because I thought they would be bad for my inflammation and I didn't feel any better after them. She told me that if I wanted to feel better, I had to listen to her. Yes, I know, I need a new doctor (Peggy - not sure if I've talked to you since this, but Dr. Kelly left the area so I've been in the market for a new doctor for a while now - i miss her so much!). As for the Restasis, yes, just started it Jan. 1st in both eyes. Was on it for 6 months about 2 years ago with no positive result so I stopped. Inflammation did not seem to be as much of a problem back then, so I'm hopeful it might help this time around.

                Instead of drops, I've actually been using genteal gel and even ointment in my left eye. I've just been squirting it up there in my upper lid. It makes it hard at work since I can't see, but atleast I have the right eye to see out of.

                If I stop this course of treatment, I can kiss the doctor I've been seeing goodbye for sure. She has already lectured me about not following her orders. That won't be a huge loss though since I don't like her. She also implied that steriods could be a long term solution, and I don't like the idea of that, so we are not on the same wavelength for long term treatment anyway. The problem is I need SOMEONE that I can call for an emergency when I'm feeling this bad just incase. I just made an appt. for next Wednesday morning with another doc in the area. I'm not even sure he is a corneal specialist, but he does treat dry eye, so we will see. I think I'll stay this course (and just really baby my left eye with drops/gels) for the next week until I see him. I'll get his opinion, and if it goes well drop this other doc. Thank you all so much for your opinions and advice. It really means alot.

                -Shells

                Comment


                • #9
                  Shells, I haven't had lasik, but suffer from dry eye inflammation and chronic blepharitis. The steroids (Lotemax and Blepharide) make my eyes worse (I can't use them for more than 3 days without them making my eyes even drier and more inflamed). Add Restasis, and that makes them even "worser."

                  I know everybody's condition is different, but more and stronger meds may not be the answer. God, I know these doctors---what they say---what they want you to try, and how insistent they are. But they don't have to live with the daily pain. These are "textbook doctors" who just keep throwing more meds at the condition.

                  Wishing you a more positive experience with your next doctor---and a speedy route to relief!

                  Calli

                  Comment


                  • #10
                    Shells,

                    You are probably right...your doc probably will chastise you for not following orders. Her bedside manner is not one ideal for your situation. She is like so many I saw when I was at my worst. At one point, I went so far as to call eye doctors offices just to ask the receptionist who answered the phone if the doctor was a kind person. I explained that I was fragile and suffering and needed someone to be nice. Most were honest I think.

                    The doctor I finally "landed" with came to me a different way, having been recommended to me by doctor Holly. But by the time I began to see him, I was already telling him the things I wanted to try. I was fortunate enough that helped me do what I wanted...blood serum drops.

                    I do hope for you a healthier doctor/patient relationship. Keep working on that...ask people you know and make some random phonecalls if you have to. You may learn a whole lot about who's out there after just a few calls.
                    Never play leapfrog with a unicorn.

                    Comment


                    • #11
                      Originally posted by calli66
                      I know everybody's condition is different, but more and stronger meds may not be the answer. God, I know these doctors---what they say---what they want you to try, and how insistent they are. But they don't have to live with the daily pain. These are "textbook doctors" who just keep throwing more meds at the condition.
                      Calli
                      I could not have said it better myself! Thanks for all the advice guys. I think I've already changed my mind since this morning about sticking with all these prescriptions. It seems like every time I turn around its time to put another drop in, and my eyes (both of them) were raw as ever today. I can't help but think it is the dry air in my workplace that started this whole mess, and my poor little humidifier is no match for the huge open space I sit in. I tried to find a desktop one this weekend but couldn't (the kind that shoots out the front instead of the top). I'm pretty sure I saw one at Wal-Mart once, so I'll check there. If not, I know someone posted about one, so maybe I can order it online. It might help better if I can aim it right at my face.

                      Comment


                      • #12
                        Steroid rebound dryness

                        I use Vexol when my eyes get so irritated that I can't function anymore. If I use them for more than a few days, they dry out my eyes. So there seems to be either a "rebound" drying that takes place, or it's the preservative in the drops that makes my eyes dry.

                        Comment


                        • #13
                          Originally posted by calli66 View Post
                          Shells, I haven't had lasik, but suffer from dry eye inflammation and chronic blepharitis. The steroids (Lotemax and Blepharide) make my eyes worse (I can't use them for more than 3 days without them making my eyes even drier and more inflamed). Add Restasis, and that makes them even "worser."

                          I know everybody's condition is different, but more and stronger meds may not be the answer. God, I know these doctors---what they say---what they want you to try, and how insistent they are. But they don't have to live with the daily pain. These are "textbook doctors" who just keep throwing more meds at the condition.

                          Wishing you a more positive experience with your next doctor---and a speedy route to relief!

                          Calli
                          steroids have made my eyes worse/more inflamed too, i was given them by the same kind of "textbook doctors" even tho my eyes did not feel or look inflamed, from day one my eyes were sore on them and i kept calling telling them they were making me worse and they kept saying to keep taking them, that they take time to work, when they kept getting worse they said it's not the drops, they only soothe and help inflammation they wouldn't cause it, now i'm trying to get off them because i feel they are truly the cause of my most recent problems and my eyes are now so painful a week after stopping them, has anyone tried to wean off steroids, i was only on one drop of alrex once a day which is a pretty low dose, i guess i should have tried every other day before stopping completely, i've read they can get worse after stopping them, but does it slowly start to reverse and get better, how long does it take for them to get out of your system, i really wish i had never used them because they've had me stuck in this cycle of misery for months, i'm afraid to be off them because of the pain and inflammation but at the same time i think it's the only way my eyes can try to start to heal on their own, and it's not something that's safe to be on long term anyway--help!

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