Hi my name is sarah and My daughter was diagnosed with JiA with uveitis when she was 2 years. It was devastating news that had lots of long waits to see how many joints would be affected in the beginning. Her main joints affected are her knees with a toe and finger too. In the beginning salfasalizine was introduced alongside ibuprophen and steroid injections. When it was found that Emmie had Uveitis meds were changed and Emmie then needed to change her medication to Methetrexate 10mg. She had been on Methetrexate for 4 years then as she was doing well cons decided to slowly take her off. Finally Emmie came off Methetrexate , 9 weeks later it all came back. This was awful I really thought it was gone. She has been in a flare now for 14 weeks and back on Methetrexate and just recently had 2 steroid injections in her knees, she has had hydrotherapy constantly.. I feel so terrible, lonely, useless as a mother. I feel so bad for her. I hate this disease I wish it would go away. So many people make me feel alone. It is so hard to deal with this unpredictable chronic illness.
As a mother I want to take it from her. She is 8 in two weeks and we can't even celebrate on her birthday as she has to have her injection, we will the next day, but I want so much to do it on the day. I feel so sad with nobody to talk to I worry so much. Now she is on 15 mg of methetrexate. I am in shock still. Sarah