2 year old with JIA, possible move from Methotrexate to Etanercept

[VictoriaT]

Hi, this is my first post. My little girl was hospitalised with a hot, swollen ankle at 13 months old, which was treated as septic arthritis and surgically washed out.

She was 18 months old before JIA, oligoarthritis, was diagnosed and she began steroids, followed by methotrexate at about 21 months old.

She will be 3 in February 2017 and is still on methotrexate, given to her weekly via injection by Community nurses.

About 4 or 5 months into having the methotrexate, she started to get sick on it, so began taking Ondansetron as an anti-sickness medication.

She is probably more phobic about taking the anti-sickness meds than having her injection done and it's a constant source of stress every weekend, knowing that we have to either force it down her or trick her into taking it in juice etc.

The consultant is suggesting that she moves from methotrexate to etanercept in the new year. We understand that this will be 2 x weekly injections as opposed to the methotrexate which is 1 x weekly.

Does anyone have experience of using etanercept in a toddler/child and have anything to say about side effects / sickness / it in general and how it compares to methotrexate?

I'd be really grateful to make contact with anyone in a similar situation, a young child with JIA.

Thanks, Vicki

[kerstinm]

Hi there, my 13 year old was put on mtx aged 10. After three months, as it was not having any effect, she was moved to etanercept. We have this as once weekly with a low dose of mtx also once weekly and are doing this on the same day. As far as we are concerned there are no side effects for the etanercept, but the injection is more difficult. Due to my daughter's dose it does not come as an epipen, so is a normal syringe - the liquid is thick and can sting, at the beginning there maybe a hive at the injection site, but this tends to go. So, the injection is quite painful, that's the only problem.

[VictoriaT in reply to kerstinm]

Thanks for the reply kerstinm. My little one has her mtx via a normal syringe as she (and correspondingly her dose) is so small. It is painful for her but she recovers quickly. Hoping that she's big enough soon for an epipen (but dreading having to do it myself and her not understanding why mummy is hurting her). Great to hear that your daughter suffers no ill effects from the etanercept. I hope she continues to do well x.

[Hidden]

Hi, I'm not a parent, but I grew up with JIA, my parents went through the struggles you mentioned, and I can speak from experience about switching from methotrexate to etanercept. Etanercept is so much better, no sickness. Kerstinm is right about it stinging though. During my treatment they switched from syringes that you mix yourself, to pre-filled syringes. The pre-filled were convenient, yes, but stung a lot and I didn't like it. I don't have experience of the epipen though. I didn't get any other side effects, and etanercept works faster than methotrexate.

[NicoleS13]

My daughter is 8 years old and has had JIA since she was 10 months old.. she is on a low dose of methotrexate (injectable form) that I mix into juice to drink once a week. Her doctor recommended her to take weekly enbrel shots on top of the methotrexate. Last year she was on it for about a month and developed a full body rash so we stopped it. We tried it again just recently to see if it was , in fact, the enbrel. She did develop an injection site rash after the first shot that was not that bad so we did it the shot the following week. She developed an extremely large rash covering almost her whole thigh that was hot, hard, bumpy, itchy, and red that grew within the few days of taking it then started to develop a rash all over her body. I will not be continuing enbrel.