Friday, November 05, 2010

Just a tiny wobble to the spinning plate of Anna's Uveitis . . . .

Another trip to see the pediatric ophthalmologist this afternoon. Worked out well (except for a REALLY long appointment because Anna needed her eyes dilated). Anna did not have school, so I rescheduled the appointment for today, instead of next week when Anna has an activity at school which she did not want to miss.

Anyway, he found a trace of cells in both eyes. Now I try to go in with no expectations (usually have plenty of other "stuff" of life to be thinking and praying about--Anna's issues--because they're usually rather mild compared to other kids with JA--are just one of those many spinning plates I mentioned in the last post). I was also figuring that five weeks of Pred Forte eye drops should zap out that little bit of inflammation from the last time (it has worked in the past). But no. That was not meant to be for now. I was just a little discouraged, especially when I heard that there were a few cells in the right eye, as well. That must have shown in my face, because the doctor (who usually does not like one bit of inflammation and is always eager to increase the biologics) said, "It's okay! She's doing fine, and we'll just keep doing what we're doing for now, and check back in six weeks." Now I do appreciate that, because I'm not eager to try one of the very few options we have left at this point, especially right before the holidays. The good news is that the pressures in both eyes are just fine--for that we can be thankful.

The not-so-good news is that the next appointment is just two days before Christmas. A few years ago, I made a mental note to never schedule an appointment in Hershey during the week before Christmas. I have to pass three major shopping areas along the way, and traffic is HORRIBLE. I found that out the hard way. But it could not be helped this time. We'll make the best of it.


Ellen said...

Hello - My daughter also has JRA (pauciarticular) and chronic uveitis. She is almost 10 years old and was diagnosed at age 2. I wanted to ask you if you tried Remicade. My daughter's most chronic condition has been eye inflammation, and Remicade has done wonders for her. We also used Pred Forte eye drops and methotrexate, but ultimately was not able to control the uveitis. After starting Remicade, we were eventually able to eliminate methotrexate completely. My daughter now only has a Remicade infusion every 10 weeks, and she has zero inflammation and joint flares. That is currently the only medication my daughter is taking, although getting an infusion is a day missed from school and a long day as well! I know every case is different, but the I wanted to suggest Remicade. My understanding is that it is the most effective biologic agent for treating JRA associated uveitis. I wish you the best of luck with your daughter. Thank you for your web site. It is so nice to connect with other families going through the same thing. Take Care.

Tammy Z said...

Hello, Ellen! I'm always glad to receive comments, so I'm so glad that you left one. Anna's rheumatologist has discussed Remicade as an option many times over the years, but he has some serious concerns about some of the information coming out. I know he has that option as one of the "cards in his hand" for Anna, but he's also paying careful attention to some of the other medications that are relatively new---one of which is Orenzia (or something like that). Anna's uveitis is mild, but stubborn. Usually there's just a "trace" of inflammation. Her joints were very quiet until puberty set in. Since her joint injections, they've remained quiet.

Are you on Facebook by any chance? I'm there as Tammy Barger Zeigler. We have a private group of 70+ JA parents and some teens. It's very much like a message board. Posts and comments are only visible to those who are members of the group. You're very welcome to join. You would just need to be a Facebook friend of one of us so that we can add you. (You can't find the group by searching.) I'd be happy to add you as a friend and add you to the group if you would like. Like you, it's refreshing and a relief to be able to connect with people who are on a similar journey.

Anonymous said...

Hi, first of all THANK YOU for your great blog and I wish to you and Anna all the best from Croatia.

May daugher is 6 with knee JIA (2 year in remission) and recently right eye uveitis from 10/2010, with synechiae, she is ANA negative.

I wonder if you ever experienced eye complication like posterior synechiae or something else because of long use of cortico drops? I know for pressure.
As I understand you are on 2x drops all the time?
Is Anna ANA negative or positive?

I will try to find you on facebook :-)

Kind regards,

Tammy Z said...

Dear Kate,
Oh, I do hope you can find me on Facebook: "Tammy Barger Zeigler" I can add you to our "Arthritis Friends" group, which is a private group where lots of people (parents/teenagers/young adults) share information. I hope to update Anna's information on the blog later this week. We have a lot of family coming and going with the holidays of Christmas & New Years, and my time on-line is a bit limited, since we are visiting with so many people. The doctor's appointment last week went well. You will hear from me soon! (via e-mail and a new post here).

Anonymous said...

Tammy, I found one only "Tammy Barger Zeigler" on facebook, I hope that belongs to you. My name is Kaca Tolj Kasalo

I just want to add that by google I found out that B1-benfotiamin, Calcium, selen, zinc, C-vitamin, blackberries are related to positive impact on uveitis, so try to add some for Anna.

Enjoy your hollydays now, we'll stay in touch!

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