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View Full Version : Uveitis, dry eyes and auto-immune??


rman884
08-12-2013, 01:56 PM
This post is regarding my partner who has been suffering for about 9 mths and there doesn't seem to be an end in sight (no pun intended). What first was diagnosed as dry eyes, became uveitis, then it was thought to be an auto-immune issue; the meds that were prescribed to control the uveitis/auto-immune have now caused dangerously high intraocular pressure (the glaucoma dr wants to put in permanent tubes to relieve the pressure), blepharospasms (which require botox injections in the nerves of the eyes to control the spasms, which are very severe even after the shots), vision loss and the beginnings of cataracts.

He is seeing uveitis & glaucoma specialists at USC as well as a rheumatologist; they have been treating the symptoms but there's been no conclusion as to what's causing this. The ophthalmologist in Newport Beach who referred him to USC actually told the specialist that this "case has been a nightmare" and that he'd "used all of the tools in my toolbox" and didn't know what to do anymore.

An issue I am having is that each Dr. is treating the area of his/her specialty -- there isn't necessarily a holistic approach to his treatment. When he told the uveitis specialist that he has extreme light sensitivity and that his eye sight is bad in the morning and doesn't get better for a few hours, he was told that it's "dry eyes" and that's it. Nothing about what he could be doing for it and what should be done. When there have been side affects from some of the drugs, the specialists tell him to see his primary care Dr., but when he asks his primary care Dr about it, he defers to the specialists. It's like being caught up in a circular argument or a dog chasing it's tail.

It probably doesn't help that the blood tests have all come back in the normal range. He had a chest xray to rule out TB. The drugs he's been taking are now causing all sorts of issues.

He's been taking prednisone both orally and eye drops for months now, to control the uveitis. He started at 60 mg of the oral and is currently being weened off of it (now he's at 25 mg). He is on the 1% drops. He is also on methotrexate (25 mg once a week). He is on so many eye drops and lubricants, it would make your head spin. He sleeps in eye goggles that are made for dry eyes.

His quality of life is absolutely horrible. He walks around in dark glasses all day and any exposure to sunlight causes the spasms to take over and essentially render him blind. He is so bad that he doesn't leave the darkened bedroom; one of the Dr's assumed he was on disability and when he found out he wasn't as he needs to work to pay the bills, gave him that "you poor thing" look.

Does anyone have any suggestions or has anyone out there been through something similar? When I check message boards on these issues, the responses are specific to each condition and not the hot mess that this has become. I/we are at a loss as to what to do. Major depression is setting in at this point.

AL Lymie
08-12-2013, 09:10 PM
Does he have any other aches and pains, that he had prior to the side effects of the eye meds. Like dizzyness, memory problems, stiffness in joints, or at anytime did he have any unexplained itching or pain, or any flu like episodes before the dry issue, or after?

rman884
08-13-2013, 07:52 AM
Thanks for responding. He doesn't have any pains or joint problems. The doctors have said it's not lupus or lyme or herpes; it's not rheumatoid arthritis but since his sister has suffered from psoriasis, they are assuming that it's an auto-immune issue and that's why they've put him on the methotrexate (which hasn't worked even though he's been on it since March; the Dr has told him to stay on it for another few months) and the prednisone (which has worked to manage the uveitis but has created all sorts of other issues, like the intraocular pressure, which is in the high-30s and 40s, and the cataracts).

I should mention that around the same time that all of this started, he was put on metformin and lipitor (he's a type II diabetic) but the Drs have all said that the diabetes is not related to his issues and they won't even consider it in conjunction with his eye problems.

He's relying on me to do the research and raise the questions but there is so much information out there, it's like searching for the needle in a haystack. It's also impossible to know how far i can, or should, push back on the specialists that he's seeing.