Etanercept/Enbrel for Systemic Onset JIA

yeltepr
yeltepr Member Posts: 6
edited 25. May 2013, 18:07 in My child has arthritis
I am the other half of LizaJane10 - who has posted on this forum.

Our 15 year old son has SO JIA and is on Prednisolone, Methotrexate (sub cut) and Feldene (Piroxicam) plus other medications to manage the side-effects of these.

He is still getting arthritic problems and some rash.

His care team, who are brilliant, want to try him on Etanercept probably to replace the Methotrexate.

I am a little concerned as there appears to be some evidence that it is more toxic than Meth.

Have any parents or JIA sufferers used it and if so have you had any problems / improvements?

Comments

  • Steph88
    Steph88 Member Posts: 29
    edited 30. Nov -1, 00:00
    I've been on enbrel for a year now and (touch wood) it's changed my life. I take meth as well but I am reducing my dose of meth.

    My condition is under control and my joints are a million times better.

    I'm only 24 and I've had arthritis since I was 13.

    Sometimes it's easy to get bogged down in the possible side effects etc but, unfortunately, you just don't know until you give it a go. Everyone will have a different story for you. My advice is that if the nurses are recommending it, follow their advice and try it. It comes out of your system quickly enough if your son needs to come off it.

    :)
  • yeltepr
    yeltepr Member Posts: 6
    edited 30. Nov -1, 00:00
    Update on my original post.

    We met with the nurses and they have given us some reassurance on Enbrel. We are a lot happier now. Our son was an "exhibit" in a medical exam too so he got paid for being there - the students did a good job on diagnosis!

    It looks like he will have both methotrexate and Enbrel. The Enbrel willl allow them to reduce the steroids (prednisolone) which they believe in the long term are unsustainable and will have a worse impact on him than Enbrel.

    He still gets some rash (quite bad sometimes) and they are concerned that he will get a flare of fever and severe joint pain if they try to get him off steroids.

    Next visit is 22 May for more joint injections and Enbrel may well start soon after that.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    I was given enbrel around the same age, I had no side effects from the enbrel and it really did make a huge improvement in my symptoms. I think at the time I was also on steroids, in the long term steroids are very bad for our bodies even tho they can make a huge difference!

    Anyway I hope it goes well!