Prednisone and loopy eyes

[carriej22]

Hi Folks,

Im not sure if it's already been discussed (I could not find it, but that doesn't mean it isn't there!) but my eyes have been loopy. I'm waiting to get in to see the eye specialist (yay, add that to the list) but I'm not sure what I should be doing. My family doc thinks its the pred. My eyes are watery at times, dry at others, sludgy at other times... But mostly just blurry. I feel like I can't open them wide enough or something. I'm trying not to rub at them but they're driving me bonkers. I can see, don't get me wrong... It's just something ain't right! Currently tapering the pred, on 60mg ... I didn't have this problem on the higher doses. Appearance wise they look fine, no redness or anything like when I was first diagnosed. Just weirdness. Anyone else have a similar problem?

[Dirty Don]

Try focusing on a little white ball about 1 1/4 inches in diameter and hitting it into a 4" wide hole at 300+ yards away!! LOL...it's the pred...as my doses have gone down, my game has improved...so be it!

[carriej22]

Good to know. Today they seem fine, I find it gets worse at night when I'm getting sleepy.

All these drugs are going to make me pull my hair out!

[Dirty Don]

All these drugs are going to make me pull my hair out!

Don't do that...the drugs will do it for you! LOL...mtx made mine fall out in clumps, doc put me on triple dose of folic acid, all came back...whew!

[annekat]

My watery eyes have improved with getting off Cytoxan, lowering the pred, getting used to Mexthotrexate, and getting better in general, so it's hard to say which it was. I still have some other lingering loopiness, difficulty focusing sometimes, etc. which could be the pred or just that i haven't had an eye exam for my glasses prescription for a long time. I also have sensitivity to light which I think is the pred or other drugs. Whatever the case, I think yours will get better with time, but good thing you are seeing an eye specialist.

[carriej22]

Luckily I have not lost much hair, just a bit of thinning.. Noticing a little more on my brushes, etc But I have quite a bit of hair. I also work in a salon.. so I'm sure I could get hooked up with a dandy wig if worst came to worst. I have only been on 25mg injections of MTX for 6 weeks..So Im a little nervous what it's going to do in the future but I guess we will see.

Dropping down to 50mg of pred on Tuesday.. This is exciting to me, LOL.

[annekat]

Luckily I have not lost much hair, just a bit of thinning.. Noticing a little more on my brushes, etc But I have quite a bit of hair. I also work in a salon.. so I'm sure I could get hooked up with a dandy wig if worst came to worst. I have only been on 25mg injections of MTX for 6 weeks..So Im a little nervous what it's going to do in the future but I guess we will see.

Dropping down to 50mg of pred on Tuesday.. This is exciting to me, LOL. Since we are on much lower doses of chemo than cancer patients, we generally don't lose all or most of our hair like they do, I don't think. So you probably won't need a wig. Good thing you are lowering the pred soon!

[Psyborg]

I've had issues with my eyes every time I'm over 20mg of pred a day. Once I get to 20 it starts to improve again. The first time around I thought it might be Wegs in the eyes, but everything checked out for me. Still I'd suggest seeing a good eye doctor if it's an option for you, just to make sure you are safe.

[freakyschizogirl]

I keep getting funny eyes - they go blurry on and off and i have trouble focusing. Doesnt happen every day just every now and then but i'm down to 3mg of pred so it would be that...would it?

[Hopeful]

I also have loopy (wierd) eyes. The left one runs most of the time - particularly in cold weather. My immunologist says it is because the WG has deposited dead cells in the lacrimal-naso (sp?) duct and the tears have no place to go. If I have the surgery (saw it being done on YouTube) it would solve the watering and possibly improve nasal crusting. I also have the blurry eye thing happening. Like the eye has a layer of thick mucus over the eyeball and the focusing problems as well. Concentration seems to help the focusing aspect. I'm at 1 mg of Pred. I go to the eye doctor regularly to have scleritis checked out. Apparently dry-eye is a problem for me even in my watery eye!

[freakyschizogirl]

I also have the blurry eye thing happening. Like the eye has a layer of thick mucus over the eyeball and the focusing problems as well.

Yep, you just described me! I get exactly that. Have booked to see my GP next week (Did ya read that Dee??) I hope its nothing bad but it seems to be happening more and more when i'm driving.

[Sangye]

I also work in a salon..
Not good, Carrie. Cancer rates for people who work in salons are among the highest of all professions, and the drugs for Wegs increase that risk. Being exposed to all those chemicals is extra bad-- very hard on the liver. It might be good to start thinking about a healthier work environment.

[Sangye]

In regards to your loopy eyes Carrie (and others): it's a good idea to have regular check-ups with an opthalmologist, preferably one who specializes in AI diseases. Your symptoms sound like common pred side effects but you have to make sure.

[freakyschizogirl]

If its a pred side effect, will it go away or has it altered my sight permanently??

[Sangye]

Pred can cause early cataracts, which of course would not go away if you stopped the pred. Most of the annoying pred side effects do go away, though. The excessive tears, puffy eyes and blurred vision are usually temporary.

[Al]

Pred can cause early cataracts, which of course would not go away if you stopped the pred. Most of the annoying pred side effects do go away, though. The excessive tears, puffy eyes and blurred vision are usually temporary.I can speak directly to the cataract issue. My eyes got chewed up pretty badly on pred. Fortunately, the insurance covers the surgery, which is amazing. I've had one eye done, with the other coming next week. No more glasses!

Al

[carriej22]

Yes, there is lots of cancer risk for salon workers - I have watched many a co worker lose their lives due to cancer. I am a third generation salon rat (My grandmother was a hairdresser, so is my Mum. I am an esthetician) so it's pretty much bred into me. However, I only work a few days a week - All my personal products are all natural and free of harsh chemicals, I try to stay away from the color and processing rooms the hairdressers use unless I'm getting my own hair done.

For now it's all I've got - I couldn't imagine going back to school. I rent my own space within a salon so I'm self employed, might venture into a different business area here soon... Just need to get everything back on track first.. :)

Still waiting to see the opthamologist about these eyes, however they seem to be a bit better - depends on the day.

[Hopeful]

Pred can cause early cataracts, which of course would not go away if you stopped the pred. Most of the annoying pred side effects do go away, though. The excessive tears, puffy eyes and blurred vision are usually temporary.

Sangye, thanks for letting us know. I have a good book on Wegeners (and other auto immune diseases) that I take with me to the eye doctor so he know what sort of things to be looking for. I also wear my sunglasses everywhere. So hopefully the cataracts will stay away. Bad news: I think I'm going to have to up my pred.:unsure: Have to call my doc as some wonderful new symptoms have arisen. So it's going to be awhile until my eyes are decent.

[Psyborg]

My eyes have been messed up again for the last few weeks. Weird blur/blob in the middle of my right vision. Can't see Red/Yellow normally with that eye. I see a Opthmalogist again tomorrow to see if anything is up. In an effort to get relief on the vision I tried to lower Pred too fast and really messed my head up pretty good for a few days until I went back up a bit. I'm such a dork sometimes.

[Sangye]

Oh no, Bob. That's the exact recipe for developing elevated intracranial pressure. You don't wanna go there, believe me.

[Psyborg]

Well got to the Eye Doctor yesterday. I have developed a cataract in my right eye. He also noted a small scar on the retina that wasn't noted two years ago. He wants to see me every 6 months now. So...pred has worked that bit of magic for me :p I spent the evening making blind in one eye and can't see out the other jokes. They have me going to get a retina scan tomorrow to make sure what's up with the scar, he's concerned that it might be causing part of my vision issues.

As a side note after bumping back up to 25mg of pred the headaches are considerably reduced. I think I was being way to aggressive on the taper. Going to slow it to 2.5 every two weeks instead of 5 every week...which was caving my head in :) Given what you are saying Sangye I think you are correct, it did feel like massive pressure in my head. I feel much better at the resumed 25mg dosage.

[annekat]

Well got to the Eye Doctor yesterday. I have developed a cataract in my right eye. He also noted a small scar on the retina that wasn't noted two years ago. He wants to see me every 6 months now. So...pred has worked that bit of magic for me :p I spent the evening making blind in one eye and can't see out the other jokes. They have me going to get a retina scan tomorrow to make sure what's up with the scar, he's concerned that it might be causing part of my vision issues.

As a side note after bumping back up to 25mg of pred the headaches are considerably reduced. I think I was being way to aggressive on the taper. Going to slow it to 2.5 every two weeks instead of 5 every week...which was caving my head in :) Given what you are saying Sangye I think you are correct, it did feel like massive pressure in my head. I feel much better at the resumed 25mg dosage.

Sorry about the cataract, Bob, and other eye issues. Reminds me I should see an eye doctor but will have to choose one carefully.

As for the pred taper, 5mg per week sounds awfully fast indeed! Of course, I would never have known that before getting Wegs and reading this forum, even though I'd had some experience with pred. I also wasn't aware of the intracranial pressure thing until recently reading posts from Sangye and now this one from you. All this is helpful info for when I start to taper from the 10mg. that I've been at for awhile now.

[Al]

Well got to the Eye Doctor yesterday. I have developed a cataract in my right eye. He also noted a small scar on the retina that wasn't noted two years ago. He wants to see me every 6 months now. So...pred has worked that bit of magic for me :p I spent the evening making blind in one eye and can't see out the other jokes. They have me going to get a retina scan tomorrow to make sure what's up with the scar, he's concerned that it might be causing part of my vision issues.

As a side note after bumping back up to 25mg of pred the headaches are considerably reduced. I think I was being way to aggressive on the taper. Going to slow it to 2.5 every two weeks instead of 5 every week...which was caving my head in :) Given what you are saying Sangye I think you are correct, it did feel like massive pressure in my head. I feel much better at the resumed 25mg dosage.One of those fine things about pred they sort of neglect emphasizing. As it happens, cataracts happen for most of us anyway, it's just that pred speeds up the process considerably. (It doesn't help that there are other environmental insults to the eyes, such as more ultraviolet light from less atmospheric ozone in the temperate zones, and the fact that. like the proverbial Englishmen and mad dogs, more people are out and about, rather than taking a siesta, in the midday sun....) Sorry about your eye issues, Bob. Obviously, I can't say anything about the scarring, but I can tell you that cataract surgery is a relative breeze. I had my second yesterday, and it is amazing to be able to really see again. I still need glasses for reading, but not for driving.

Al

[Psyborg]

I'm not too worried about the surgery. I had lasik surgery about 7 years ago and it's similar in scope as i understand it. I got an OCT(?) test done so need to hear the results about the scarring, but I have to wait on the cataract surgery for the cataract to get worse. The down side is it is already annoying for me, probably because I work on a computer so I have to spend a lot of time reading.

[Sangye]

Whew! Glad your head is better, Bob. Sorry to hear about your eyes. I hope the retina scar isn't affecting your vision. :sad:

[Psyborg]

I think I'm having a couple of things affecting my vision. I think the scar is causing the little black dot I see occasionally in my field of vision. I think the cataract is causing a general bluriness in my right eye.

[drz]

I think I'm having a couple of things affecting my vision. I think the scar is causing the little black dot I see occasionally in my field of vision. I think the cataract is causing a general bluriness in my right eye.

Floaters inside your eye also cause black dots or spots but they seem to move like flies or bugs flying by. Some times it is hard to know if it is something inside your eye or outside of you.

[KathyB]

I have a good book on Wegeners (and other auto immune diseases) that I take with me to the eye doctor so he know what sort of things to be looking for.

Can you share the name of the book to which you are referring? I'm due for an eye doctor appointment & having moved, I'll need to find one in this area. Thanks & hope you will continue to improve!!

KB:cool:

[greenjanet]

i was looking through wikipedia wegeners granulomatosis and it describes eye problems have a look .... hows your marriage going young love its
gorgeous xx janet

[Psyborg]

Heard back from the eye doctor yesterday. I have something called Central Serous in addition to the cataract. It's basically a tiny blister under the retina, and should go away over time. Reading up it's caused by cortosteroids. Anyway that explains the weird black dot in my vision the way the cataract explained the blur on that side.

[pberggren1]

that totally sucks. I sure hope it does get better.

I know when my retina started bleeding I e-mailed everything to Dr. Garrity at Mayo for a second opinion. He agreed with my doc here. You might want to do the same.

[Sangye]

Heard back from the eye doctor yesterday. I have something called Central Serous in addition to the cataract. It's basically a tiny blister under the retina, and should go away over time. Reading up it's caused by cortosteroids. Anyway that explains the weird black dot in my vision the way the cataract explained the blur on that side.
Whew! Glad to hear it will resolve on its own.