Thursday, September 30, 2010


Poor Jordan. Poor, poor Jordan. I think we're about to go round and round with the eyes again. 6 months after her JRA diagnosis her eyes joined it. We've had periods where she couldn't be inflammation free for more then a week or 2 then we added the biologic meds and she was doing OK. After about 6 months on Enbrel it stopped working and we went to Humira. She did great for a while, like over a year, and now her eyes are active again. Joints are too but I'm really worried about her eyes.

There is talk about Remicade. Don't want to do it but what other options do we have? Not many. We did up her metho as of 9/20 and we still have room to up it more if we don't see any improvement on this dose. She's also back on naproxen 2 times a day to help with the achy, stiff and swollen joints. We've only done 2 doses but Jordan told me today she feels better then she has in a long time. I feel bad because she doesn't tell me when she hurts. I have to pry it out of her and even then she doesn't want to take any meds. I guess hearing the doc say she needed to be on it again on a regular basis helped. So, we see the ophthalmologist in 4 weeks. In those 4 weeks before we see her we are tapering J's pred drops. Problem is, I know Jordan and her history of uveitis. J will be clear when we see Dr. T but a day or 2 later the inflammation will start again and I won't know it until we see the doc again. Usually Jordan can tell when she's flaring but this time it came on so fast and hard our family optometrist caught it. We've been running from doctor to doctor since the beginning of September and I'm tired of it. But this is the life of a mom with a family who has different medical issues.

I am supposed to see another rheumatologist tomorrow for my "second" opinion. I use quotes because my lupus has already been diagnosed but the new doc I saw a few weeks ago with our new insurance didn't believe I was really sick. So the day after I saw him I called to get in with another rheumy. I'm out of meds, I have a lovely rash on my face, I hurt all over, I'm totally exhausted-- took 2 naps today and plan to go to bed when the kids do- but I'm not sick. I went in for blood work and I've got a few results but the ones that will show, or should show, I have lupus aren't back yet. We'll see what happens tomorrow...

Is it bed time yet?!


Natalie said...

Is there any way her ophthalmologist can see her more often? We found out the hard way that complications from uveitis can hit fast and hard. When my daughter's uveitis was active her oph. saw her once a week, with the first few appointments just days apart. It was hard, but in my opinion the only thing that saved her vision.

I will join you in wishing Jordan's uveitis away, forever!

Amy Cunningham said...

Jordan's history SO closely matches Jenna's!! WOW! Meds and histories are nearly identical. Plus, Jenna also will NOT tell us when she is in pain and when we confront her with it and try to give her Motrin, she refuses. We also have to tell her doctor to lecture her. I will send up some prayers for Jordan as well as for you Mama. (((hugs)))

Deetipton said...

We haven't had to deal with uveitis yet, but I do know what it's like to have a child in pain that doesn't tell you. Emily does better now that her rheumy put her back on regular Motrin, but only because it's bubble gum and she likes it. She totally flipped when we switched her from Enbrel to Orencia infusions. I think it's because they are trying to retain some control. Good luck with the eyes :( I hope that her flare comes under control very quickly. I swear it's in the water right now. It seems like all of the kids are struggling right now.

Jacob's Mom said...

Oh No!! I remember you saying that Jordan had been off her Humira for a while because of insurance issues. Has she been back on it long? Maybe the Mtx being increased will do the trick!
I am so sad to see she is flaring again. :( Keep us posted after her next visit.