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germaine
02-15-2009, 10:08 AM
I've just had a recent bout of vision loss. One eye became almost totally blind. I could only see flat grey shapes in a very heavy fog. I happened overnight, at first a substantial blurring, then the heavy fog eventually over the next few days. I had lots of pain near the tear duck and above the orbit of the eye and above my eyebrow. All on one side only. The pain seemed to reach the mid point of my nose on the affected side.

The doctor bumped up my prenosone to 50 mgs without any result and continued vision decline. Finally I was put on a prenosone IV drip three days and the opthamologist gave me steroid eye drops which seemed to immediately relieve the pain (even before the IV drip) No one could see a lot wrong with the eye, but the opthamologist said there were a lot of cells in the visual area of my eye. A cat scan showed some matter on the eye muscles.

Bottom line, my vision is improving substantially. The lower part of my vision is still a little blurry and it seems there is almost a ripple affect in what I see. I am hoping for more improvement eventually. It is about a week since my IV drips (3 days) I am greatful for the improvement I already have. Not reading is not fun. I thought I would let others know, so they would know what worked for me. The doctors seemed to be a little uncertain about the best way to treat the problem. Germaine

crackers
02-15-2009, 10:47 AM
hi germaine.
wow that sounds like scary stuff.the mind blowing thing with this disease is that we all seem to suffer the same basic symptoms but it's the variance in severity of individual symptoms that's amazing.i haven't read anything for a couple of years now because i find it hard to focus on the written word yet on the pc it's ok.i've had my sight checked out and tests for cataracts but all ok.this last few weeks i've been waking up to very sticky eyes around the tear ducts.then this morning i made the mistake of trying to read a newspaper.since then i've not been able to focus properly on anything,my eyes are extremely watery and feel uncomfortable(that's the only way i can describe it).
john

andrew
02-15-2009, 10:51 AM
Yikes, that's rough. Sorry to hear that you had that trouble but good that it's improving. I hope it continues that way!

Carol
02-17-2009, 03:05 PM
I had vision loss on two occasions when the Doc said to drop Prednisolone by 5mgs. I too had greyish areas in my vision. They really couldn't find alot wrong either except some swelling of the optic nerve. I had IV Pred and I was due for my 6 weekly chemo so all that helped to settle it down. I was lucky that my optometrist sent me to the Melbourne Eye and Ear Hospital so I had great care - it's a public hospital so I didn't see a single account and even had my own room as I had to have my own toilet with the chemo. As I have said on this forum before, dropping Pred by 5mgs is too much for me so when my reheumy told me 2 weeks ago "you're doing so well, I want you to keep dropping by 5mgs every few weeks" I wrote up a schedule to drop it by 1mg each week and it stilll wroks out eventually what he said but over a 5 weeks period.
Hope your eyes continue to improve - I was really scared when it first happened to me.

kelly
02-17-2009, 03:22 PM
hi germaine i have had some vision problems also i have been to specialists and i am do for a nother eye exam in march. my vision is blured mostly at night and sometimes in the moring readine the ppaer. how long did you have problems before you started seeing flat gery shapes also do you ahve any suggestions

Carol
02-17-2009, 03:34 PM
Hi Kelly, I got the blurred grey shapes within 4 days of dropping the Prednislone. I also became very wobbly again in the legs at the same time. I wonder if you had changed or lowered your medication prior to this happening? Regards Carol

Sangye
02-18-2009, 02:01 AM
Carol, it sounds like what you're describing is elevated intracranial pressure (aka pseudotumor cerebri). It's cause is not well-understood, and there are various theories. But one of the known causes is dropping prednisone too fast!

When it happens, the cerebrospinal fluid in the brain/spinal cord can't drain as quickly as it builds up. This extra fluid takes up space in the closed skull. The only "exit" route for the pressure is through the eyes. The pressure building behind the eyes actually pushes on the optic nerve so much that it swells (called papilledema). That causes your blind spot to enlarge. (When your blind spots are enlarged, it's like someone smeared Vaseline across your visual field, or maybe large grey areas, like you described.) The more it progresses, you get rippling in your visual field and then vision loss. Tremendous headache and vomiting with some unhuman force, too. It's deadly if not corrected. If it's mild, your body can correct it. If the cause is low pred, adding a little pred will correct it.

I had it quite severely and nearly died. They did a spinal tap to relieve the pressure. My vision is still a little weird and I still have to take a drug that lowers the fluid a little. We don't know why mine developed, actually.

I'm surprised your eye docs didn't diagnose it, though. Pretty easy: bilateral swollen optic nerves is either due to a brain tumor or PTC. (If it's just one eye, then by definition it's not PTC. More likely due to Wegs.)

germaine
02-18-2009, 02:50 PM
Thanks for all the imput everybody. My problems started Jan 13 with a blinding overnight headache. 2 days later I had a IV chemo treatment and I was Ok for about 9 or 10 days, then the headache returned, mildly, then stronger. January 31st I realized that one eye was as blurry as a heavily steamed window. The internest increased my pred from 20 mg to 50. The next 4 days things only got worse. Overnight the pain in my left eye and surrounding area was intense. Friday I went to emergency, then opthomologist. That was the day I only saw dark grey or black shapes, no color, no facial features, just grey ovals with that eye. The steriod drops immediately helped with the pain, but it wasn't until after the first Pred IV of three that I was able to notice an improvement. (vague colors, a little shape where eyes should be. It's taken about 10 days to pretty well clear up. I little irregularity still, but I think it's going.

I had a CT scan, it did show Wegeners on the eye muscle. I'm on daily chemo now. I think the IV was a mistake, in hopes of keeping my exposure down. I'm on 60 mgs now of pred. I'll stay there for another 3 weeks then start to take it down.



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andrew
02-27-2009, 07:54 PM
Hey Germaine, how goes the vision?

germaine
02-28-2009, 02:40 PM
Hi Andrew,
I feel pretty happy that my vision seems to almost back to normal. I think the focus is a little off, I am due for a follow up next week, but that is nothing. It is wonderful to see again. Germaine

andrew
02-28-2009, 02:43 PM
Excellent news! Very happy that it is so much improved!

Gwenllian
02-28-2009, 11:00 PM
I started to lose the vision in my left eye in 2007, and I had an optic neuritis (some inflammed veins in the back of the eye). Steroids helped, and chemo, and ritixumab. No problems now.