tom going onto enbrel as well as mtx now

lare73 Member Posts: 154
edited 9. Jul 2011, 16:10 in My child has arthritis

so tom has had JIA for 12 months now, and the mtx has made him very sick.
so reviewed and hes going onto enbrel with reduced dose of mtx.hoping this will help him, he gets very low and upset, mix that with being almost 14 and hormones :shock:

also, hes been referred to podiatry as his feet need assessing, he has pain and hes walking funny and his little toes are twisting, :???:

physio still involved, think tom has hadenough now, he has hypermobility too, and his jaw hisover extended, too many teeth and needs a brace, so seeing orthodontist, how much more can my boy take :cry: He hardly ever complains, we both want to go to lourdes together, so trying to find out how we do this.
hope you and yurs are well
clare x


  • stickywicket
    stickywicket Member Posts: 27,720
    edited 30. Nov -1, 00:00
    Hi Clare,

    Poor Tom sounds to be going through a tough time. I do hope the reduced methotrexate will also reduce his sickness and that the enbrel helps too. I’ve not had that but I’ve taken methotrexate for years with no side effects though I have to take a stomach protector and take all meds with food. (I presume Tom takes folic acid for the meth?) I know that quite a few people on here take enbrel and my impression is that, like all the other meds, it helps some more than others. I hope it will work for Tom.

    I also hope the podiatrist will be able to help with Tom’s feet. There is so much they can do these days – even insoles can be custom made - I feel sure it will help. I can barely walk without my surgical shoes but do really well with them.

    What with the physio, hypermobility and orthodontic needs I can see the poor lad must be really fed up. The teen years are hard enough without all this and teens want so much just to be like everyone else.

    As for Lourdes – does your church or diocese do anything? Mine has an annual pilgrimage but other, smaller groups also go.

    You don’t say anything about yourself, Clare, but as a mother of two now-adult sons, I really feel for you. It is so much harder to watch those we love in pain than to undergo it ourselves. However, from a previous thread I know you have been diagnosed with is-it-RA(?) too. So how are you? Are meds working for you? How do you feel about your own situation? This is really hard for both of you. I do hope things will improve soon. Take care.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    my church do trips, but we have changed priests and he is very old school and not the most approachable and friendly, so thought id try sort it myself, less stress :roll:

    i am still undergoing tests, i have arthritis in hands, knees and toes so far and crohns disease is almost definite, had tests and biopsies which indicate it, had barium small bowel study on tuesday waiting for pill cam next. im ok, no meds yet as waiting for full diagnosis. this was all delayed as i was pregnant but sadly i miscarried so now they are pushing the tests through.

    tonight is mtx day and tom is moody, i hate doing this to him, he has plans with friends tomorrow and he alrady said he cant go because he will be ill. so sad.
    he is not in major flare o thats something, just stiff in the mornings and aches in feet and wrists.
    thank you for your lovely message, i run a group for JIA in yorkshire and am currently in the process of getting more parents involved, got 3 so far and its lightened the load, they are brilliant. we are hoping to do an event in september and a full meet up in december, we have a facebook group called JAC, have a look if you get chance.
    thanks again, nice to know we are all there for each other x