Frustrated and Scared

[eman]

I got my diagnosis on Thursday, dutifully picked up both the prednisone and atropine eye drops and began using the prednisone straight away. The ophthalmologist prescribed them for 4 times a day, but said to feel free to titrate the dose myself as necessary for symptomatic relief up to hourly. The atropine was only as a back up if I didn't get relief from the prednisone . . .

Using the drops Thursday and Friday, I found that every two hours was what I needed for it to be "manageable." Which is to say, not complete symptom relief but enough that I could deal with it. So I kept that dosage up all through the weekend.

Sunday, I had tickets to the Redskins/Falcons game, and nothing short of hemorrhaging from every orifice could've kept me from that game. I was very, VERY thankful that it was overcast and raining, but even so, dressed like a vampire preparing to head into direct sunlight, with thick wrap-around sunglasses, a hat and everything else. I brought the drops with me in the purse, and noticed when I took the sunglasses off, and tipped my head up (such that the field lights were right there) that some of the photophobia was coming back. Not bad though, and it remained mostly manageable.

However, today I woke up and it was back to the incredible raw redness that I had the day I saw that doctor! I've since put in the atropine drops (deciding functional blindness in one eye was preferable to the pain) and bumped the prednisone up to hourly and it hurts a lot less and the redness has gone down to more of a soft pink, but I'm scared and frustrated. Is it normal to slide back a little bit during treatment? Especially so early on when I was already using the prednisone at a higher frequency than the "base" level? I have a follow-up on Wednesday and am certainly going to let the doctor know this, but I'm just trying to figure out what to expect.

At this point, I haven't been diagnosed with any comorbidities--though my half sister is HLA B27 positive (but she's a half sister, and it could be from the side of the family we *don't* share), so I have an appointment for an autoimmune work-up though at this point iritis would be the only "symptom" as I'm also a runner and have never had any joint pain or issues . . . I also volunteer regularly in a health care setting, so she's ordered a chest x-ray and scratch test for me in case I've been exposed to TB. (And FWIW, my last OBGYN appointment was "clean" so that's already been ruled out).

The only other thing I can think of that might *possibly* be of relevance is that I had a flu shot 2 days before this all started, though perusing the boards it seems to be that immunizations aren't really a cause for concern as far as "triggers."

Anyway, thanks for letting me vent . . . and I look forward to hearing what ya'll have to say.

Emily Ann

[Mike Bartolatz]

emily, Welcome to the group!
iritis can be difficult to control and it can take several weeks to do this. if you are using generic prednisilone acetate 1% eyedrops, make sure you shake them vigorously for about 3 minutes. the steroid doesn't suspend well in solution so it has to be done this way. also press in over the inside corner of your eye whey you put drops in to close off the drains so that it doesn't go down your sinuses. this way the drop is absorbed by the eye and tissue surrounding the eye.
HLA B27 may be the cause and if this is the case, the doctor can start you on an Oral NSAID taken at prescription dose for about 6 months to see if it's antiinflammatory properties will keep the eye quieted down and then he can slowly stop the steroid eyedrops. you stay on them for 2 years to retrain the immune system to stop attacking the eyes. you don't need symptoms of arthritis for this gene to be active in uveitis.

the atropine is given to help prevent the cells accumulating between the iris and the lens and causing adhesion. if you don't use the atropine the cilary body won't relax causing pain when there is minor adhesion. photophobia can be from inflammation in the back of the eye so this has to be monitored as well as from inflammation of the cornea and iritis. make sure you keep your followup appointments and get in right away if there is an increase of floaters, double vision etc. you require a 'to be seen as needed' type of appointment schedule, don't wait for a rountine followup appointmen even a week off to call and talk to a nurse or doctor.

the steroid dose and frequency of use is indicated by the amount of cells present inside the eye. it is critical to follow directions of frequency because too little won't stop the inflammation.

I use dark green wrap around sunglasses on sunny days and brown tinted ones on overcast days and to help with glare from the computer screen, I also have yellow tinted driving glasses to cut glare of oncoming headlights and when outside in foggy situations.

when your eyes are quiet, the doctor will tell you to discontinue the dilating drop. it can take several days to a week or more to be able to focus the eye once it is stopped, the steroid can also impact vision for a few days after discontinuation..

wish you the best,
Mike

[eman]

Thank you!

I saw the ophthalmologist again today, and she said I'd gone down to a 2+ from a 3+ (so improvement, but still a way to go), and she wants me to continue the prednisone drops hourly for another several days before tapering and to keep up the atropine at least until I've successfully tapered to every 6 hours on the prednisone. She also raised the possibility of oral prednisone if I'm not able to taper--having been on that before for asthma, I'm not eager to do that, but I'm at the point that I'm also not closed off to the idea. I'm a technical writer professionally, and this has taken "rough day at work" to a whole new level.

I've been wearing my prescription sunglasses almost all the time, but am hoping to get out this weekend to look into something that will go over my regular glasses, so I can try something yellow to cut down on the glare of my monitor.

Thanks again! I'm still frustrated, but I feel much more hopeful that the light at the end of the tunnel isn't going to hurt.

[Mike Bartolatz]

your frustration is normal with this stuff. one can put up with the pain of a broken bone as that doesn't really impact your ability to do daily living the way that vision problems do. it is great that you are responding to the steroid eyedrops but remember a VERY slow taper off the the steroids is recommended. hopefully the current dosing regimen gets you to less than a 1+ and that you won't need to use oral steroids.

with your asthma, you might want to explore autoimmune conditions associated with uveitis especially if your uveitis is granulomatus in nature (ask your doctor what type of uveitis you have) because there are lung conditions associated with this. Sarcoidosis, systemic sclerosis, crohn's disease come to mind as does lupus. it can take sevreal decades before the antibody tests show up so you should be re tested periodically for these things if you lung function goes down, if you develop swollen partotid glands ( just behind the jaw below the ear) dry mouth and dry eyes occurs, irritable bowel, gerd, mouth sores, arthritis, raynauds (hands turn blue in the cold) pink skin over your fingers that becomes thickened etc or if your serum calcium is elevated and your vitamin D3 is low, skin rashes occur on your legs, face etc.

not meant to scare you but often lung involvement portrays more than just asthma as it can be a catch all diagnosis without more detailed testing.

wishing you quiet eyes,
Mike