Eye hate RA-funny, right? | Arthritis Information

So...As I wrote on my lovely it bites thread, I am back to having major eye issues. I have had every time of "itis" recently. Right now, in the words of my dr-My corneas are shredded. I currently have a "bandage contact" on each eye. They look like regular contacs, but they protect the corneas so they can heal. You keep them in 24/7. I use lubricating drops hourly. I have been to the eye dr. 2x already this week, and I go back tomorrow. My eyesight has become much worse and the sensitivity to light is awful. Of course, much of this is due to the holy corneas I now have. When I went and saw the RD at Duke, he mentioned having me be seen in their eye center. He is worried about either an additional autoimmune disorder( I already have RA and sjorgen's), or curious as to why my eyes have taken such a hit. It is progressed past a troublesome issue, to a quality of life issue. I mean, come on RA...I have already given you my two jaw joints-for keeps, what else do you want!

My eye dr and RD here both called down and talked to the Duke RD. He in turn contacted the eye center and got me an appt. for Tuesday. They all agreed that I needed to be seen prior to the blateral joint surgery on the 28th. It's @8am so I will drive down the night before(3hrs. away). I'm going to wait until the sun goes down since it will be so much easier to drive.

So..here's the question(knew there would be one somewhere, right?). They said to expect the appt. to take 5hrs...HUH!?!?!? What on earth can you do in 5hrs? Does anybody have any experience with such a workup? I resisted the apt. initally, but it seems that they are a top 10 eye center in the country. I just hate yet another drive. I just got back from a 3hr drive in the opposite direction to MCV for my presurgical jaw appt. Both the RD's(aren't I lucky, I have two!) want to get the eye drs opinion as to med changes as well. You guys have heard the yes/no Rituxan debate. I can't start any med until August due to the surgies, but maybe the Rituxan is preventing worse damage. Or, maybe the eyes are caused by another autoimmune cousin so Rituxan won't make a differece there. When did this all get so confusing?

I've been lucky in the fact that I live in the largest city in this part of the state. There's an excellent health care system in place, it just seems that I have "outgrown" it unfortunately. Can't wait till the day that I only have to drive 15min for an appt.

Jaw update: saw the surgeon today and the date is still set for the 28th. He told me today to expect a 2 day stay. He's not comfortable releasing me earlier with the pred complications that I have been experiencing. Plus, the chest is much tighter with the decrease. I asked about going to the hotel, and he said most likely not this time. He also said that I was the best post surgical patient he has had. Compliments, compliments.... He said part of that is due to the fact that I tend to be pretty positive, and I am used to hurting. Really, aren't we all??? But, I did end up in the ER if you all remember. I was dehydrated which was due to not being able to swallow. There was just so much inflammation down the throat. He and I both know that I would have just kept on truckin' and ignored the swelling without complaint. So, I might as well just resign myself to the fact that I'll be hanging out at the hospital. I told him, we RAers are a tough breed! I've learned from the best :)

You continue to amaze me with your attitude and your courage.

You are such a strong woman!

I'll be keeping you in my thoughts and prayers.

Becca... wow..

This is not a journey any more. It's a hike.. Up Mt Everest!!

I wish you the best.... Hang in there and continue to be the strong woman we all know you are
If you don't mind me asking, where do you live. I am in North Carolina and saw your post about Duke. It would be nice to know someone on the list who lives here as well. Duke is great but I know it is even better to not need them. I wish you the best with all this.sounds like we have similar problems...

my jaw has eroded in that the lower jaw has receded causing an open bite. specialist said they could put bone back in to correct alignment but if erosion continues it would be a wasted surgery. ie jaw replacement, NOT READY FOR THAT. I have no pain issues with jaw and am in no flares or inflammation. the problem is that i have lost a ton of weight and i do eat (5'6" 105 lbs) but takes longer to chew so not as much.

the eye condition is called Corneal Melt, treatment for me was steroid shot to eye, steroid drops, doxy and contact bandaid. i had lost 50% of corneal in two spots on left eye. corneal grew back after treatment.

Keep us posted on your progress and Good Luck!

Wow! Corneal Melt sounds just horrible as well as painful! I'm so sorry, Mabus and Rebecca! I've been having some bad eye issues recently too, I go back to the eye doctor on Monday for my one month recheck. I was doing so well this spring with my eyes, to have it come back was a real disappointment. I was sort of thinking the Cimzia was helping the eye issue but it doesn't seen so.

I hope you find answers, Rebecca, I look forward to hearing what they have to say and I'll be thinking about you!

Mabus, I'm sorry to hear about your jaw problem too! Are you drinking any type of supplement (Ensure maybe?) to maintain weight? I'm sending you vibes too!

Got a phone call and have an appt. set for Tuesday morning. It's at 8am so I'm going to drive down tomrrow night and stay in a hotel. It's a 5hr+ appt. so it will be a long day.

janicer-I live in SW Va. Kinda in your area.

You are such an amazing and incredible person, Rebecca. I hope they're able to fix this for you!

gosh.. Rebecca. and you too, mabus! the eye issues are really bad.. I am so sorry you suffer so... wishing you good luck at the docs' on tuesday, Becca..

and mabus.. missed you! sorry things are so rough... hope for a better day ahead

I work in Hillsville and have to travel over sw va for consults. Beautiful country. I live in Lowgap NC but really feel that is part of Virginia. I hope you have great success at Duke. If things get worse for me that is where I will go. The drive is bad but the knowledge base there is worth the drive.is your rheumy in va? Hope all goes well for you!!! Page12010-07-13 22:40:48
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