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?!