My name is Georgina. I was diagnosed with Iritis three weeks ago and it has gone from a very red, painful eye to slowly getting better. I have to admit, I'm a bit anxious because I have sailed through 43 years without needing anything more than reading glasses...Now things are fuzzy and the light sensitivity gives me splitting headaches ( has this been anyone else's experience ? ) I have three very close family members with autoimmune stuff going on. One with RA, one with Inflamatory Bowel Disease, and one with Sarcoidosis of the eye. Up until three weeks ago I thought I dodged the family autoimmune "bullet". I've had tests to see if I have inflamation anywhere else, and thankfully nothing has turned up. Do you know if that could change? The Opthomologist I am seeing is very focussed on my eye, so I'm planning to see my family doctor about the persistent headaches. This has really derailed things....I'm off work as I just can't tolerate the computer or light for extended periods...I feel like I'm being a whiner...any words of wisdom to help a newbie to adjust ?
Thanks so much for this wonderful website, and the opportuntiy it provides to connect with others
if you have granulomatus uveitis, then Sarcoidosis might be implicated. irritable bowel disease in the forms of ulcerative colitis and Crohn's disease are also directly linked to uveitis. Some individuals with RA and other mixed connective tissue disease processes can also develop uveitis. because of this, you might ask to be checked for 'clotting factors', amyloidosis through anti cardiolipin antibodies, etc. this might explain headaches by way of arteritis. if it is related to Sarcoidosis, it responds VERY WELL to Methotrexate therapy. if your relative has uveitis as well related to sarcoidosis you might inform her of this.
the newer Biological Response Modifier drugs, Remicade and Humira work very well in Crohn's patients with uveitis controlling both the underlying condition as well as the uveitis. they are given along with something like Methotrexate or Cellcept to retrain the immune system to stop attacking the eyes. a new drug in study is Ustekinumab which may also help. it is in the approval process for Psoriasis and in study for many conditions and uveitis in Europe and hopefully here in the USA.
Thanks so much for the detailed information. I'm amazed at how well informed you are. I forgot to share that I'm up in Canada so our pharmacutical guidelines are a bit different than FDA. I'll do some poking around. Like I said, I need to see my family doc to have some discussion around this. The eye guy, while incredibly qualified and educated, sees up to 40 patients a day and has little time for chit chat. I guess I'm just grateful to have a place to vent in your group . It seems like no one "gets" it in terms of how scary this is, and how hobbled a person feels, unless they've been there. Right now I need to get the light sensitivity and headaches sorted out then I can get back to work and feel more normal ! So far I've learned that cultivating patience is a must- do when dealing with
something like this. Thanks again for your support and willingness to listen
a couple of suggestions to deal with the photophobia: get some brown tinted polarized wrap around sunglasses to wear while on the computer and on overcast days outside. they make 'fit over your glasses' sunglasses that you can often purchase at a drug store where they sell reading glasses or you can buy them online. Solar Shields makes some for about 20 dollars US. there are better quality ones that you can get through an optical shop.
Dark green ones are best for outdoors. make sure they fit snuggly to your face to prevent reflection of light off of your face onto the back of the lenses. do you also have severe dry eyes? this can occur with sarcoidosis and with many of the forms of 'arthritis' and IBD and mixed connective tissue diseases related to uveitis. you might ask to have your eyes tested for this. Keratoconjunctivitis can occur, inflammation of the cornea and conjunctiva because of dry eyes. good quality preservative free lubricating eyedrops can help with this. Blepharitis can also occur because of dry eyes. photophobia can be increased if this is the case as well. you can turn down the brightness of the computer, remove fluorescent lights in te work area and use an incandescent light or lamp near your work space.
No you're not a whiner. The pain scale on this thing is a butt-kicker. People at my office have been amazed to see how I can go from competent manager to can't tolerate noise or light. I had to stay home in my "cave" for several days until the medicine began to work sufficiently enough. Keeping the eye dilated to rest it also adds to the light sensitivity. I have taken to wearing clipon shades over my regular glasses at work because of the overhead lights and computer. I also ordered some new lenses with a rose tint on the top for use from now on at work. I only need the clipon shades during an attack, which I'm almost over my last one. I'm hoping the NSAID prescription I finally got for daily use will prevent further attacks. It's worth it to me to live on that the rest of my life rather than have another Iritis attack.
