JIA

[Mom2four]

Hi I am new to this forum.

My daughter who is 9 was diagnosed with JIA in February. The arthritis was in both her wrists. She has been taking piroxicam and omeprazole since February and has had two steroid joint injections. It was worked in the one wrist but swelling remains in the other wrist but no pain. Last week we were told that the arthritis has spread to her knee and one of her fingers so to treat it they're suggesting methotrexate. I am reluctant to give due to side effects but feel I have no option. I'm at a complete loss. She is extremely thin and has lost weight and constantly has mouth ulcers. She is having tests to get to the bottom of weight loss and ulcers but I'm guessing it's a side effect of the nsaids. Anyone had a similar experience ?

Mom2four I am sorry to hear about your daughters diagnosis.
I was diagnosed with polyarticular JIA myself when I was 8. (knees, wrists, fingers, hips and ankles)

I would like to reassure you about methotrexate, which I took from about 9 years-12 years old. Then later in life on and off. I was under care at GOSH and methotrexate was the absolute turning point in my treatment. Steroids were short lasting, naproxen helped a bit, but meothotrexate kicked the arthritis in the bum.

Your dd will likely have one or two blood tests a month to check liver function. The worst side effect I had was sickness. I hated taking methotrexate (For me it was a couple of tablets taken once per week) as it made me feel sick the day after. Doctors and family thought I was playing up, but it is now a known side effect of methotrexate.

There is the option of having a weekly injection if your dd does not like the tablets.

You say your daughter has mouth ulcers- poor thing, I know methotrexate can cause stomach ulcers (I am not medical so don't know if these two are linked? But perhaps something to bring up with the consultant?)

It takes 8 weeks for the MTX to 'kick in', once you start taking it so don't expect immediate results. I have a friend who it didn't work for, but he is an adult.

I really hope you are coping well and your daughter improves soon.

thank you so much for your reply. She is yet to start the methotrexate so her weight loss and mouth ulcers are a bit of a mystery at the moment. I'm thinking it could be a side effect of the NSAID.

Did your JIA go into remission by the methotrexate? I'm just worried about her quality of life growing up. They've suggest weekly injections rather than tablets

Yes it did go into remission after methotrexate for about 7 years. It came back, but the flair was fairly short lived. Now when I get flair ups they tend to only last a few weeks, occasionally get joints aspirated but I lead a very normal life! (Horse riding, swimming lots, sports e.t.c)

I'm sure she will have a normal young life once you find a drug that works for her. That's the key.
X

Thank you so much for your post. You have no idea how much it has reassured me Xx