lotemax long-term?

[QUOTE=kitty;50968]I have been using Lotemax 2 drops per day for nearly a year now. I was recently cut back to once a day because my intraocular pressure was at the high limit of the normal range. My doc is not sure if I am a steroid responder or if I am in the early stages of glaucoma or both. Steroids can cause glaucome with long-term use. I am considered a glaucoma suspect but continue to use Lotemax once a day for now. I am undergoing a test at the end of the month to find out if there is any damage/thinning to the nerves in the back of my eye, one of the earliest signs of glaucoma. If that test is okay, I will stay on Lotemax and my doc will watch me closely.
QUOTE]

Dear Kitty,

I would like to offer you some comforting words here.

You say your IOP was at the high limit of the normal range. According to what my doctors have been telling me, any IOP within the normal range, even in the high limit, is not at all a problem or a sign of glaucoma. It is safer to reduce the frequency of drop instillation if you are at the high limit, but is no cause of concern t this point.

Also If you were a steroid responder it would have taken much less than a year of using steroids to reach a higher than the normal range of IOP.

Even in people with IOP as high as 35 glaucoma may not be present for quite some time, and there are many other factors besides increased IOP causing glaucoma.

More consolation may come from the fact that steroid induced glaucoma is different and treatable, I mean even curable. Although that does not make it any less dangerous for dry eye sufferers.

What puzzles me is why would your doctor suspect you are in the early stages of glaucoma? Does he see any other changes in your eye unrelated to eye pressure?Do you have any explanation on that? It is really strange.

I was never on steroids in my life when my eyes were at their worst inflammation and damaged cornea-- that is when I had a higher IOP than what it became after I was given steroids and the inflammation subsided (just a bit mind you, it took months for a significant decrease in inflammation). So the steroids reduced my IOP by reducing the inlammation and other problems my eyes were struggling with.

I have always been afraid of steroids, up until now, though they have helped me. I do not like them at all. However, for a doctor to claim that you are a glaucoma suspect when your IOP is within the normal range-- that definitely needs further explanation. Is he just trying to charge you for more tests

I have my IOP checked every month. If its within the normal range, the doctor has never suspected any thinning of the nerves, or whatever your doctor mentioned.

Please can you tell us why he thinks that you are a glaucoma suspect with IOP within the normal range?
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Dear Mary,

Thank you for the links you provided.I think that may be we should refresh the effort with the anti-BAK petition somehow.

I do not know if anyone will listen this time, and may be someone experienced in dealing with dry eye patient problems like Rebecca could find successful new ways of presenting the problem to the concerned authorities on that matter.

I also think that awareness of the debilitating nature of dry eye is also lacking, but unfortunately have no ideas how that may be improved.

regards,

[mary kenny badami]

I hope that this is not a digression from the main point of this thread, but I noticed that Ringo wrote:

On top of that, steroid drops are preserved-- that is not good news for dry eye either.
But again, how can we make pharmaceuticals focus on dry eye with this BAK issue?
no idea... may be we could make a petition, all of us on the forum, and recruit others.

Nearly a year ago Toril (from Norway) and several other members here who are affiliated with European associations asked for our cooperation in signing a petition against BAK and similar preservatives.
I believe that the opportunity to sign the petition is closed now, but you might be interested in corresponding with Toril about her group's endeavors.

There are several threads here on DETalk about it, so I'm giving a link to just one of them --
Petition against the use of preservatives in ophthalmic preparations:
http://www.dryeyezone.com/talk/showthread.php?t=8616

[kitty]

I have been using Lotemax 2 drops per day for nearly a year now. I was recently cut back to once a day because my intraocular pressure was at the high limit of the normal range. My doc is not sure if I am a steroid responder or if I am in the early stages of glaucoma or both. Steroids can cause glaucome with long-term use. I am considered a glaucoma suspect but continue to use Lotemax once a day for now. I am undergoing a test at the end of the month to find out if there is any damage/thinning to the nerves in the back of my eye, one of the earliest signs of glaucoma. If that test is okay, I will stay on Lotemax and my doc will watch me closely.

The doc who prescribed the long-term Lotemax did not think it would cause elevated IOP so he never checked my IOP in all the time I was on it. I admit I was not an advocate for myself. I should have insisted on it. It was during a routine eye exam with my regular eye doc that the elevated IOP was discovered. I also have a cataract in one eye which steroids can cause or make worse. I have other issues with my eyes that put me at higher risk for glaucoma.

Short answer, it is up to you to weigh the risk vs. benefits of long-term steroid use. If you are on Lotemax long term, please insist on having your IOP checked frequently- every three months or more often if your doc recommends it. You can try FreshKote (an RX lubricating drop) and see if that brings you enough relief that you don't need the steroid dropos at all. I'm now gun shy about the steroids, but they are the only thing that give me relief. I'm also scared of glaucoma, so time will tell for me whether I can stay on the Lotemax. Once a day is not nearly as effective but the FreshKote does help.

Due to serious complications with my eyes (ulcers,etc.) I was prescribed to be using FML steroid drops indefinitely under strit doctor's control (check of IOP and eye every month). I have been using them for about 7 months now, thank God with no difference, except improvement.
However, many many people are steroid responders-- they are sensitive to steroids, and this is NOT an option for them. Also older people are at a greater risk for developing cataracts.
Also very important is the frequency of instlling the drops, even with non steroi responders. At one point when I was using 3 drops a day, my pressure rose to 21, which is exactly the threshold limit for normal eye pressure. Doctor immediately told me to taper them to 2 drops a day.That seems to be fine by now.
So far for mild steroids. But when it comes to prednisone, dexamethasone and the like,these are powerful, and they should never be used long term. They accumulate in the eye (even FML does, about Lotemax I know it is a different kind of steroid that gets washed from the eye) and the effects may show years after stopping them.
I am very afraid of this myself, but what can I do? Just sit and wait for a better alternative...there you have it one of my many anxiety triggers...
On top of that, steroid drops are preserved-- that is not good news for dry eye either. But again, how can we make pharmaceuticals focus on dry eye with this BAK issue? no idea... may be we could make a petition, all of us on the forum, and recruit others

[Rebecca Petris]

Recently struggled with that very question!

The drops I was using for GPC were no longer doing the job so I went on Lotemax. Once the latest episode was under control I had to think long and hard about whether I wanted to do it long term - which at this stage seems like it might just be inevitable if I want to wear my sclerals all my waking hours as I had been doing.

Couldn't face it, personally, esp. at my age (41). In the end for the short term at least, I ditched the Lotemax except for flare-ups, restructured my days so that I normally work only in the afternoon, and cut down my lens wear time so I don't have them in most mornings unless I have to drive somewhere.

[sighthound]

Is anyone using Lotemax on a long-term basis? My local dr is suggesting it. (1 drop/day or every other day) Thinks of it as a 'quality of life' issue weighed against the risks of steroids. 4 years of trying everything else, and not improving. As I see it, if the m. glands atrophy from the chronic inflammation and plugging, then my eyes will be toast anyway. But this is a hard decision, so any input would be appreciated.