Carolyn Member Posts: 2
edited 29. Jan 2014, 17:52 in My child has arthritis
Hi Everyone,

My 9 year old daughter has JIA and currently on 15mgs of Methotrexate weekly (injections) along with folic acid Difine 100mgs and losec. Over the past few weeks since her pain has eased i have taken her off the Difine and losec.
She went to see her consultant last week who i proceeded to tell that she was doing amazing she has been so active and in no pain, but after an examination i was told that her Arthritis is still very active and that she thinks the next step is to put her onto Enbrel injections.
I have been looking into it and i am very concerned as the side effects can be far worse than the methotrexate.
Does anyone have any experience with Enbrel and can they please share all of their information with me. I have an Aunt who takes it and says that it is a wonder drug but it is easier to make the decision if you are taking it yourself and not making the decision for a 9 year old child. :(


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am so sorry you have had to find us but I hope we can help with information and support.

    I tried Enbrel to little effect but I know it can work very well for others. These drugs have not been around long enough for any of their long-term implications to be fully understood but, to my mind, what matters is the quality of life in the here-and-now together with reducing the possible future joint damage that this disease can cause. From the moment we draw our first breath we are in the great unknown of life, we don't know what will happen to us or when so we have to make the best of what we have whilst we have it. You gave your daughter life so try it; you cannot protect her from the risk but you may be able to from further harm. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lizajane10
    lizajane10 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi there, My son now 16 (was 15 at the time) was put onto Enbrel as with methotrexate he also needed steroids. We also were very concerned but it works well. Yes the potential side effects read as very worrying but it seems a more sophisiticated drug, targeting a specific chemical rather than just killing off cells as the methotrexate does. He doesn't get any side effects from the Enbrel at all, whereas the methotrexate still makes him feel so ill every week. It's all very worrying but our hospital say they have been using it since 2003 with none of the very serious side effects so far. I reckon it's better to try and protect his joints now and try and prevent him needing surgery at a young age.

    One of the down sides is that it has to be kept in a fridge - we were supplied with a small fridge as part of the prescription but it's not the most convenient.