In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
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Hi! I have the EXACT same problem, only I also see little dancing spots or stripes when exposed to anything other than dim lighting. Anyways the light/sun really bothers me a lot and my eyes are always hurting from something or another. I went to optometrists every year for 10 years and they were like yeah yeah whatever. I went to the opthamologist and he was like hey your pupils are messed up, here have this eye drop. The eye drop is called pilocarpine, it reallllllly burns your eyes and it's difficult to see correctly for maybe 20 minutes afterwards, but once that stops my eyes feel lots better!. I can even drive at night without having problems since the other cars' lights aren't making me see spots or stripes everywhere or giving me eye pain. The other nice part is it's only like $10 for the eye drops and the drops last a couple months.
I thought I should mention I also live in Illinois and have a bajillion friends who are Illinois cops. You can get permission to have tinted windows if you have a medical reason, like a skin or eye condition that is aggravated by the sun. You can tint everything but the front windshield for medical reasons. The optho or even your primary doctor should be able to write you a medical note about that, so once you get that note, whenever you get stopped for your tints they can't write you a ticket for it. If they DO write you a ticket anyways, you can take your medical note to the circuit clerk or to the traffic prosecutor or the traffic judge and your ticket gets tossed. You should also totally complain to the watch commander of the police department who writes you the tint ticket despite it being medical tints, the cop who wrote the ticket will get chewed out big time and they will make sure to pre-emptively chew out every other guy in the department to make sure nobody else writes someone a ticket for medical tints.
Good luck at the optho!
Brian, sounds like the eye doctors you have seen are jerks. I had that problem too until my GI sent me to my health group's opthamologist. Since he's part of the health group, that guy is there for actual eye "problems" and not just eye testing like every other place would be, so he actually did something to help my eyes. He was much more willing to try medicines and drops than mess with glasses or contacts or sunglasses. There's not really a reason why any doctor should not give you the option to try drops or medications if that's what you want to try. The pilocarpine drops I got were pretty harmless and have been around for 30-40 years, apparently it's like the eye doctor equivalent of prescribing aspirin since it's simple and well established.
It's a good idea in general to get evaluated occasionally by the opthamologist since crohn's can mess up your eyes and since prednisone itself can mess up your eyes too. Make sure you get checked out by a real opthamologist who is concerned about eye damage instead of by some lazy hack in private practice who wants you to buy sunglasses from him.
You are the first person I have come across that also has (had) scleritis of the eye. It really got me down when I was 20/400 in the bad eye and started to affect the good one and 100mg of Prednisone per day was not helping. I was really hurting both physically and emotionally. My flying (piloting) days were over. I could no longer drive our RV. I didn't dare get in the boat without someone sighted with me. I even bought a white cane.
Then I got in to see Dr. Janet L. Davis, MD http://www.bpei.med.miami.edu/site/find/find_results_doc.asp?doc_id=8&old=1
My old ophthalmologist did not know what to do with me so I researched it and found that Remicade was the treatment of choice. I then got my G.I. to put my on it. Dr. Davis added 20mg of Prednisone and bumped me up to infusions every 4 weeks. That was seven infusions and seven months ago. Now my good eye is back to 20/14 and my bad 20/70 due to the retina damage and a cataract, probably from all that Prednisone. I plan to get that removed the first part of June.
I know now that it was never a sinus ache. It was the scleritis. about a month ago, I got another “sinus ache.” Oh crap! Here we go again. But rather than take a Vicadin that would just stop the pain, I took 60mg of Prednisone for just that one day. It did not work as quickly as a Vicadin would but it did work. Today, that’s my secret weapon.
Lifestyle changes are still in order but I threw away the cane.
Scleritis is actually quite painful! I would wake up at night and not be able to sleep. It hurt to focus on anything and light hurt my eye. My doctor gave me Acular eye drops and then he put me on Prednisone to get rid of the inflammation--I am really hoping it does not come back!
I had Nodular Scleritis and I don't even think that is the worst kind you can get!
Dave, did the Scleritis leave your eye "scarred" at all? Where I had the Episcleritis in both my eyes, I can see a bluish tint to where it was. My Opthomologist now wonders if I really had Scleritis all along because my eyes never responded to the corticosteriod eye drops (I tried Fluromethalone, Tobradex, and Prednisolone).
Have you had any problems with the Scleritis returning?
Post Edited (ozonehole) : 5/13/2008 1:25:15 PM (GMT-6)