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Very upset about high IOP.


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Old 03-12-2006, 12:08 AM   #1
purple2067
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Unhappy Very upset about high IOP.

Just a little bit of background info for those of you who don't know me. I have very, very bad dry eyes and severe eye allergies. After years of trying different drops, my doctor finally found a combination that seems to work for me. In addition to allergy drops 4X a day (Usually 2X a day, but now the allergies get really bad at this time of year, so he upped it.) and tear drops every hour or so, I use some Ophthalmic steroids. I use Flarex eyedrops, which contain Fluorometholone Acetate, 4X a day. I use FML ointment only at night, and Tobradex ointment on my lids when they get irritated. We know Dexamethasone (the "dex" part of Tobradex") is a very, very powerful steroid and would make my IOP go up rapidly. So I NEVER put it *in* my eyes. Only around the lids and corners.

Anyway, all was going well with this combination of drops. Because I am on the steroids my Ophthalmologist wants to see me every two weeks to check my Intra-Ocular Pressure and make sure my corneas still look OK(no infections, etc...) Until now, my IOP has been anywhere from 12-15, which is 100% normal. I have been doing fairly well with the dryness and allergies too, because of the steroid treatment.

For the past few days my eyes have been *extremely* light sensitive. I just attributed it to the bright sunlight we've been having lately, and my severe dryness. That's always been the cause of my light sensitivity. But it got to the point yesterday and today that my sunglasses did not help. I had an appointment with my eye dr today anyway, and he said that he too would usually think it is from my extreme dryness. (By the way, my corneas look very good because of the steroid use!) Just to be safe though, he checked my IOP, and shocked the hell out of me when he told me it is *26* in both eyes!!!!!!!!!!

I nearly started to cry right there in the office. This means that we're back to square one. I am obviously going to have to come off of the steroids, which is going to make my dryness go back to what it was before. I can't do that again. It could be devastating.

He wants to try eliminating one thing at a time in order to pinpont exactly which medication is causing the high pressure. Or, it could be a COMBINATION, in which case I think I will just die because I won't be able to use any steroids anymore, period. I am suffering a lot with my dryness, but I won't risk getting Glaucoma at the age of 25 and possibly losing my vision.

I am a worrier by nature, and I am very close to freaking out here. I am praying that just eliminating the Flarex gets my pressure down enough to allow me to continue using the ointment in my eyes. (I don't care right now about using the Tobradex on my eyelids. We can figure out something else for that if we have to.)

Please help me calm down!

Last edited by purple2067; 03-12-2006 at 12:21 AM.

 
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Old 03-12-2006, 01:36 PM   #2
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Re: Very upset about high IOP.

Hi purple Im sorry - its awful when you find something that helps and then for whatever reason you may be denied it in future. That has happened to me too (not the same circumstances).

I dont think steroids are ever a long term solution - for me they have never done much to help my dryness anyway, so Im not too bothered about using them.

I have seen some of your posts - but cant remember some of the details without trawling through them all.

I am assuming you have already tried restasis to no avail? Like me you are young, in your twenties - do you know what caused your dry eyes in the first place? I think when you're fairly young and suffering this debilitating problem, there should be more investigation into why it is occuring.

I know you are upset because steroids work really well for you and it scares you, the prospect of you not being able to use them again. But at this moment in time - you dont know that is the case, you sound very happy with the doctor you're seeing so follow his lead. It may just be a case of tweaking your current treatment plan.

Youre right though - dont go risking glaucoma on top of everything else.

Take care - and some deep breaths. I know how hard it is, this crap takes over your life.

 
Old 03-12-2006, 03:34 PM   #3
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Re: Very upset about high IOP.

Quote:
Originally Posted by purple2067
...I am obviously going to have to come off of the steroids, which is going to make my dryness go back to what it was before. ...
Perhaps, but maybe not.
Breathe.
Take it one step at a time.
Maybe the steriods had already gone over to the dark side and were no longer helping the dryness.
Not likely, but there are enough troubles for the here and now without borrowing more from tomorrow.

Okay.
That's the pep talk I usually give myself.
But it doesn't work very well when I'm not taking Risperdal, which is making me fat, sleepy, and dizzy, so I may have to go off of it.

Let's both agree to hang in there.

 
Old 03-12-2006, 07:16 PM   #4
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Re: Very upset about high IOP.

Thanks.

I have had some time to digest this all, and I realize now that it is not the end of the world if I have to give up some of my precious steroids.

The thing is, we do know what is causing my dryness. Auto-immune problems and very bad environmental allergies. I've had allergy testing hoping I could get shots, but the allergists I have seen have all said that I am not severely allergic to one thing, rather I am moderately allergic to *everything*. Pollen, cedar, grass, maple, and dozens of others that I cannot recall right now. So nobody wants to give me allergy shots because they would have to give me too much. My auto-immune problems, as I have mentioned here before include MS, and possibly Sjogren's Syndrome. My blood tests for Sjogren's keep coming back as "borderline" and I refuse to take potentially dangerous treatment for something they cannot positively diagnose. I do take allergy pills and use nasal sprays and all that good stuff. My eyes seem to be the most affected by any and all medical problems. I get a bladder infection and I've got to be concerned that the anti-biotic won't affect my eyes.

I don't want to be on ophthalmic steroids forever. I know they're not a long term solution. But right now there's not much else out there. I can't use any of those herbal remedies because of my MS. I also can't risk trying some of the other drops mentioned (Dakrina and Dwelle) because my eyes are too sensitive.

So far, I am two days off of my Flarex drops and my eyes seem to be handling it fairly well. I have not left the house today because I was exhausted and slept all day (which always helps). So we'll see what happens tomorrow when it is a more normal day for me.

 
Old 03-13-2006, 01:40 PM   #5
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Re: Very upset about high IOP.

Ive tried Dakrina and Dwelle - and found my eyes too sensitive for them. I also need to put the drops in more often than what was recommended with these ones. My eyes dont even seem to like the supposed 'safe' preservatives in tear drops.

 
Old 03-13-2006, 01:57 PM   #6
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Re: Very upset about high IOP.

Hey Elyse,

I'm so sorry to hear about your setback with the eye pressure. That is so weird that it just happened like that out of the blue. Knowing your doctor though, I'm SURE he will be able to find the cause soon and figure out the right solution for you. He always seems to take such excellent care of you!!! I'm really glad that he had the sense to check yoru pressure so that you could do something about it before doing any harm to your eye sight.

I just saw the post about how you wanted help calming down, and as I read on, here I find that several hours later you have already calmed yourself down. I knew that you would though because you are a fighter and are always so strong when dealing with your eye problems. I know you will get through this one too. BUT, in the meantime, I'll be praying that you don't have any bad flare-ups not being on the steriods. I hope that things went well today when you were back working.

Michelle

 
Old 03-13-2006, 02:01 PM   #7
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Re: Very upset about high IOP.

I do not have dry eyes, but I've had high IOP for as long as I can recall. My IOP generally is about 22 in both eyes, but my ophthamologist is not so concerned. He always checks my optic nerve and finds there is no change. He believes it is normal for the pressure to be high in my eyes.

I had a blepharoplasty in November 2005 for cosmetic reasons. I had hooded upper eyelids and undesireable puffiness below. I saw my ophthamologist prior to and after the surgery. In February, my IOP was 16-17 in both eyes. I was so surprised. I don't know for sure that the blepharoplasty can be the reason for the reduction in pressure, but I can believe it if I want to!

You probably don't want or need a blepharoplasty, as you already have dry eyes. I just wanted to comment on the high IOP subject, since I had concerns about this, myself.

I hope your eye doctor can find a solution that works for you.

 
Old 03-13-2006, 06:32 PM   #8
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Re: Very upset about high IOP.

Thanks everyone.

I am still rather concerned about this new development, but I guess I had to know it was a possibility with being on steroids. I don't really notice any difference one way or the other right now. My light sensitivity has stayed the same, for the most part. And my eyes are very very itchy and watery, but they'd been like that for the past few days anyway. (allergies) I have to go back tomorrow to get the pressure checked. I was so happy with how well my eyes had been doing. He was really really impressed with the condition of my corneas and I thought that maybe I was finally making some progress. I hope this isn't a step backward.

I know my doctor has the knowledge and the concern to figure out a new solution for me, but it's just that it takes so long to find something that works!

I don't really notice a terrible steroid withdrawl right now because I am still on the FML ointment. But wait until he takes me off of that one. Oh boy. I am praying that he doesn't have to. I think the next step will be to give up the dexamethasone (Tobradex) on my eyelids, since he said there's a very slight possibility that it could be absorbed through the skin and cause the pressure to go way up. Anyway, we'll see in 18 hours if my pressure has come down any from being off of the Flarex. I hope that's the solution and we don't have to investigate further.

 
Old 03-13-2006, 06:34 PM   #9
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Re: Very upset about high IOP.

Oh, btw. I did not go back to work today because I am a substitute teacher and nobody was absent. So today was not a true test. But, I was out and about for a while running errands and going to class, and my eyes did not like it one bit. They are a bit reclusive, preferring to stay indoors, sleeping with the warm mist humidifier on!

 
Old 03-14-2006, 11:31 PM   #10
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Re: Very upset about high IOP.

It's good to hear you aren't having much reaction to being off the steroids.
My eyes were itchy from the ages of about 13 to 24.
Getting pregnant may have changed my chemistry.
I don't recommend that, but there are other ways to balance your chemistry.
Or maybe the itchiness will just go away as your body goes through natural changes.

 
Old 03-15-2006, 06:22 PM   #11
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Unhappy Re: Very upset about high IOP.

SP, my eyes have been dry and itchy for 5 years. Just when I started developing all of my auto-immune problems, they became very symptomatic. I've tried just about everything over the years to get my body properly balanced. But I can't use homeopathic herbs and stuff because of my auto-immune problems. They can make it worse. My hormones seem to be pretty well in balance (although my cycle has been off, but that's a topic for another board!)

Anyway, I went back yesterday to have my pressure checked. Now, on saturday he checked it at about 12:00 in the afternoon and it was 26. Yesterday, he checked it at about 5:00 and it was 22. He said that is on the very high end of "normal", but he was not at all convinced that I had made any significant improvement. He firmly believed that the pressure only went down a little bit because of the difference in the time of day. He said that had it been in the morning, it probably still would have been around the same. So next week I am going at 9:30am. That'll give a more accurate measurement of my progress. My pressure is usually anywhere between 12 and 15. So 26, or even 22, is a MAJOR difference!

So, since he wasn't thrilled with 22 either, he took away the TobraDex ointment that I had been putting on my eyelids. He thinks that should do the trick, and then we'll go from there.

The other good news is that he thinks I have a low-grade eye infection from being weaned off of the steroids. Hence the unusually severe itching I've been having since yesterday and the redness and puffiness. So, here we go with anti-biotic drops again. 3 days, 4 times a day and see him in a week for a pressure check and follow up for this stupid infection.

So now I've just got my FML (fluorometholone) ointment left, and he said that if the pressure doesn't come down, I'll have to give that up too. I jokingly told him that the only way he's taking that from me is if he pries it from my cold, dead hands!

Still waiting for the miracle, cure all eyedrop here.

Last edited by purple2067; 03-15-2006 at 06:26 PM.

 
Old 03-15-2006, 07:19 PM   #12
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Re: Very upset about high IOP.

It sounds like there's a good chance that stopping the Tobridex could help.

 
Old 03-16-2006, 09:04 PM   #13
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Re: Very upset about high IOP.

That's what we're hoping for. My eyes are still very light sensitive. I know that even after the pressure comes down to normal, that will take some time to get better.

I'm not liking this one bit. My eyes are itchy and dry and burning, just like they were before. They had gotten so much better on the steroids, and now they feel worse again.

 
Old 04-13-2006, 06:59 AM   #14
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Re: Very upset about high IOP.

Hallo Purple,

I'm glad that I've found this site, cos finally, I got to know that there are people who are suffering with this terrible, Dry eye disease.I've been going through this since four years. I'm living in germany, and it all began four years ago, I've noticed that I got eye infections quiet often, I didn't go to the doctor, I just washed my eyes using camille, or buying any kind of drops from the pharmacy hoping it might go away. During the years my eyes got drier and drier, at the end, it was hell. No watching t.v, no going out, no nothing, I was depressed. Cos nothing helped. So finally, last year, my eye specialist, who's the 6th one by the way, inserted punctum plugs on the lower and the upper ones have been closed. It did get better, but I still have problems. Now I've heard of this REstatis, which isn't available here in germany. What are steroid drops? I've never heard of it?
Does REstatis help if you have punctum plugs? well, I've orderd Restatis for Euro 160.-, is it adviceable to remove the plugs and go with restatis?

well, wish ya luck

 
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