lotemax long-term?

[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.

[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.

[ringo]

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

[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.

[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

[ringo]

[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?
-------------------------------------------------------
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,

[kitty]

Ringo, I have no idea how long my IOP has been elevated. In the past when I used Lotemax for short durations (3 weeks or less) my IOP never went up. The fact that my IOP has not dropped with a reduction in dose of Lotemax makes my doctor suspicious for glaucoma. Also of concern is a 5 point or more increase in my baseline IOP in the last year. I will know more after I have the GDX test. I also have some unexplained blurred vision in one eye. I have thinner than average cornea thickness which increases my risk for glaucoma 3-fold. I am nearly 50 years of age and have inflammatory eye disease, both risk factors for glaucoma. I trust my doctor's judgment.

[ringo]

Thanks for replying Kitty,

I understand there are more factors your doctor is taking into consideration; and surely observation of the optic nerve will provide a clearer picture of what goes on with you.

hope you have good news from the upcoming tests,

Dani

[sighthound]

Thanks everyone for your advice! I have been on tobradex and lotemax before, so I know to get the pressure checked. I was on lotemax for 6 weeks last fall, and I did feel quite a bit better. But about 1 month after coming off it, I was back to square one. That is the hard part: feeling good and actually being able to forget about my eyes, then feeling crappy when off the steriods. So, yes, I feel tempted to go on lotemax again. I have addressed allergies, nutrition, used restasis for the past 1.5 years (my eyes hate it, so I could not handle a higher concentration of cyclo.), warm compresses, cold compresses, doxy, azasite, blephagel, blah blah blah - everything. So I feel that if there is a treatment in the future, I have to at least keep the m. glands working until something safer than steroids becomes available. I called Leighter's pharmacy and asked if they compound lotemax preservative-free, but they said that they just dilute it. I see my local dr again in a month. I will give him a decision at that point. I will let you guys know.

[ringo]

Hi sighthound,

were you on lotemax together with the restasis?

Thanks.

[sighthound]

hi ringo,
I started restasis without the lotemax. But I have been on both of them at the same time. The trick of putting in the lotemax 10 mins before the restasis didn't work to stop the stinging. I can only handle taking restasis once per day, just before bed. It is O.K. if I don't open my eyes after I put it in. But I really am not sure if it is actually helping. Just scared to stop it since it takes so long to start working.

[ringo]

I know that sounds so silly...but have you tried putting the Lotemax after the restasis?
Have you ever considered asking your doctor about a different formulation containing cyclosporine? (compounded)
some people on this forum, including myself, have tolerated the cyclosporine much better even at higher concentrations when dissolved in corn oil (like the Moorfield hospital cyclosporine drops). If you are willing to continue this cyclosporine therapy it might be worth it asking your doctor about different formulations.

Regards,
Dani

[kitty]

hi ringo,
I started restasis without the lotemax. But I have been on both of them at the same time. The trick of putting in the lotemax 10 mins before the restasis didn't work to stop the stinging. I can only handle taking restasis once per day, just before bed. It is O.K. if I don't open my eyes after I put it in. But I really am not sure if it is actually helping. Just scared to stop it since it takes so long to start working.

Hi Ringo. I am one of those who cannot tolerate Restasis no matter what I try. My doctor has determined that I have a hypersensitivity to the medication. I had not only stinging, but intense itching and major flare of all of my DES symptoms after I put in the Restasis. One thing I don't recall you mentioning that you might try, is to put in a really good lubricating drop 10 minutes before and again 10 minutes after instilling the Restasis. This can provide a "cushion" that might help you to tolerate the Restasis easier. This is advise my doctor gave me.

[ringo]

thank you for your reply Kitty.

I had horrible reactions with restasis in the first couple of months, and the doctors I was seeing at the time were saying that many patients feel actual deterioration of symptoms, rather than improvement when initially treated with cyclosporine. That is why many doctors are prescribing it in combination with other medications, and like you mentioned lubricating drops as well.

In some people the irritation from cyclosporine and castor oil is proportionate to the underlying inflammation in the eye. (I had a time when even artificial tears were burning my eys like acid so I know about inflammation reducing the tolerance of the eyes to many things).

However, everyone is individual, and like I said before, some are sensitive to the drop or some ingredients, others may even be allergic to the drops;

in some sensitivity is manageble by mild steroids/ NSAIDS, or even only lubricating drops, in others it is not.

And still others benefit from different formulations with the same active substance.

Others benefit from first using medications that resolve inflammation more rapidly, like they are given a course of mild steroids first, and then started on restasis, or whatever cyclosporine preparation their doctors prescribe.

Everyone is individual, I know this is the point you are emphasizing. I was only trying to suggest options to sighthound, without insisting or anything.

you had such a horrible intolerance to restasis, how did you resolve it?

[stella]

Hi sighthound
How did you find tobradex? Did it work for you?
I persauded my GP to prescribe it as an ointment (there are drops )
I have had a recent flare-up after doing soo well for 2 years
I'm back on Doxy again and just today opened the tobradex and put a tiny bit on the outer lid and lid margin of one eye only If it works i may use it on both eyes once a day for a while

Tobradex = dexamethasone 0.1% + neomycin sulphate and polymixin B sulphate

My thinking is that it could help my lids, which is my main problem - prickling and itching ,so if used on the outer lids + margins only - the eyes would not get as much of the steroid as doing drops in the eye would -although i know some is bound to migrate into the eye and be absorbed through the lid into the eye also

Any one know how much ointments on the lids + mrgins do migrate to the eye itself ?

I have a tendency to treat myself - I have not much option, with our long waiting lists in GB My GP believes i know what i am doing - so co-operates with my requests ( I dont know how wise that is but it suits me )

I have made an appointment with my optometrist to have my IOP done next week and note with interest that Ringo has hers done once a month while doing steroids - Thanks for that Ringo