Juvenile idiopathic arthritis

[SnowyMama]

Please does anyone have a real life story of a child who was diagnosed with JIA and only had one or two flare ups and then it went away for good? I’ve read online that this can happen but cannot find any evidence of this actually happening in real life and I need some hope to hold onto at the moment.

My 5 year old is 6 weeks into symptoms, the start of our days are nothing short of traumatic as he can’t move his knees after sleeping, he won’t eat properly, he’s not himself. We’ve got our first Rheumatology appointment on Wednesday but I am being driven mad from only reading real life stories of it being long term. I cannot accept that my happy, healthy little boy is suddenly gone.

Hi, sorry to hear about your child's diagnosis.

My DD was diagnosed at 18 months (poly JIA), and underwent IV steroid treatment a couple of months later followed by physiotherapy. She then had weekly methotrexate injections for the following three years and came off all medication several months ago as she hasn't had any active disease in a long time. The initial steroid treatment seems to have eradicated it, which I think is quite unusual but obviously in her case that's what happened.

She's currently a very active athletic child who plays sports regularly, nobody would ever guess she ever had arthritis symptoms.

Hello, I’m so sorry to hear about your child. You must be so worried. I am close with someone who was diagnosed with first flare up as an early teen. Once diagnosed, which was a very scary time as they were extremely unwell, had been hospitalised for weeks and doctors suspected cancer, the treatment was similar to the pp with the same medication for a number of years eventually reduced to zero after a couple of years. They have had no further flares at all and live as a very healthy young adult with an extremely physical job.

I was diagnosed with JIA in 1999 at Great Ormand street hospital.
The first year was the worst, as they were trying to get the disease under control. It was really devestating for my parents to see me unable to partake in normal schooling during that time.

After another year or so, I was under control and lead a normal school life age 10-18

There is a lot more knowledge around the disease now, so I’m hopeful your child has a faster treatment journey to remission.

I’m 34 now. Occasionally have flares, but lead a normal life. I now know my triggers and understand my body better. I think it’s a journey that is very different for different people.