Chronic JIA associated uveitis

njd

Hi Everyone, my 10 year old daughter has JIA associated chronic bilateral anterior uveitis. She lost the sight in her right eye due to late diagnosis and then failure by her then specialist to treat this disease aggressively and just use steroid drops. Needless to say I found another 'proper' uveitis specialist to save her left eye who started her on mtx and ciclosporin. This brought the flare and cells down from 4 (the worst) to 2, but then stopped working. She's now on 20mg of mtx and tacrolimus which isn't the miracle we were hoping for. If this doesn't work she'll be moved on to a biologic called Humira. This can potentially be such a destructive disease but it helps to know there are other Mums out there who know what my daughter and I are going through.
Wishing you all quiet eyes
Nicki

mraonicus

Dear Nicky,
I am mom of Anja,4,5y old,she has JIA uveitis since she was 2y old.She is on mtx 12,5mg/week injection and topical therapy,all this time.
I want to ask you few things
1.how old your child was when she start with uveitis?

2.what do you think with this bad eye,is she able to see something or?

3.how long your child used cortico drops,how many times during the day,and do yu have some pause or not?I am asking this because my Anja is under cortico drops all this 2,5years,with some pause,but even if she is inflamation free in some period,our dr keep some number of drops(2x every second day)..

4.How often your girl had inflamation(every month,some number in year??)and how often you take her to control her eyes?

Thank your for your post,I hope we will be able to share some information in furure
I wish you and your girl all the best
Marijana,Belgrade,Serbia

littlemummy2

Poor thing, the drs are a bit crap i think when it comes to giving a proper diagnosise. Phoebe not that long ago had uveitis again, because of lack of information phoebe had an eye test the dr wanted to see her in 2-3 month six month down the line they eventually sent for her and found uveitis, she now wears glasses all the time. Which i believe is down to them not sending for her. The dr we saw had a go at me and said i should have seen our gp for them to get onto them. It's crackers that all we believe they will hel pour kids out and they don't. I'm glad to hear they saved her sight in the other eye. Jia kids can be quite resiliant at times. I say well done to them all they all have a lot to deal with.

I hope you both are doing okay and have a great christmas.

Michelle