tom has been taken off mtx....

lare73 Member Posts: 154
edited 10. Sep 2011, 17:25 in My child has arthritis

so tom is going onto enbrel, we are awaiting a delivery.

he was told at clinic that he will have 50mg per week of enbrel and continue on mtx but a reduced dose as hes currently on 20mg a week.
the nurse has informed me today that he does not have to take any mtx now! this has made tom's day, but i am a little concerned, why a change of heart, i asked and they said as tom had bad sickness it was decided to take him off it completely, yet he has had these side effects for a year. they said the reduced dose would not give him the symptoms.

so confused as to how i should feel, i am chuffed no more mtx, apprehensive about enbrel and worried he may flare in the interim period! :-/


  • pollyj
    pollyj Member Posts: 16
    edited 30. Nov -1, 00:00
    Any change is scary, I panic when my son's dose is altered . He has just had his MTX dose increased. He has decided to ignore that as the injection into his poorly joint seems to be working. I can't argue now he is 21, I have to let him make is own decisions now he is grown up. It's not easy. I do hope your Tom responds well to his new meds. If only we could wrap them in cotton wool and carry them in a pocket.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00

    I can well understand your mixed feelings. I’m an old hand at methotrexate but no experience of enbrel. It might be that, if you posted this on the LWA forum you’d get some suggestions as there are more people on there with experience of both meds.

    Looking on the bright side, if Tom’s feeling good about dropping the MTX it will help him cope with the new meds.

    Pollyj, you are absolutely right that it’s hard to let adult children take their own decisions, especially when they’re not the ones we ourselves would take. But we can’t mollycoddle them through life and, in any case, that would prevent a good adult relationship developing between them and us.

    I’d guess that the steroid jab was to help out until the increased dose of methotrexate took hold but I’ve come off it myself before operations and then just taken it up again afterwards so, if he needed to, there should be no reason why he can’t just start it again later.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi lare, how's things? I am sorry I haven't replied before now, I have been (somewhat selfishly) wrapped up in myself for a week or so, not good enough, DD. :oops:

    I can understand Tom's relief at being off the meth - he was struggling with it for quite a while, wasn't he? Meth is often prescribed with the anti TNF meds, it does support them and help their effectiveness so I was told. I wasn't on meth - dunno why - for the first two anti TNFs that I had - neither lasted too long with me and didn't achieve much, but I have been taking it with the humira: that has been the longest-lasting to date, it hasn't achieved anything like what I wanted but never mind.

    There is always the chance that they may well decide to prescribe a smaller dose of meth in the future, to support the enbrel, but that may not necessarily mean a return to the nastiness. Injected meth means smaller doses (the liquid is more powerful as it does not have to be digested) and that in itself can mean far fewer (or no) side effects. If that is suggested don't worry about it - it could actually be a good thing.

    I wish Tom the best of luck with this new meds regime - let's hope it helps, yes? Take care. DD
  • Steph88
    Steph88 Member Posts: 29
    edited 30. Nov -1, 00:00

    I'm Steph, I'm new to the forums but not new to arthritis. I've had RA or JIA since I was 13.

    Just thought I would offer some experience of mtx and enbrel.

    I'm 22 now, have been on mtx (different doasges) since I was 13 and it just wasn't working any more so after a long time I finally got the enbrel.

    I don't know how old Tom is sorry not sure if he will do the injections himself or you will do them? Are you getting the pen or the needle?

    I've been on enbrel for a few months now and it's working wonders. I've never felt better. I still take mtx along with it at the moment but may be taken off that slowly.
    With regards to the mtx gap, I've learnt that you can go without mtx for a bit and the flare ups are slower and less aggressive at first as it can take some time for the mtx to leave your body.
    I've been great on the enbrel. I was mainly worried about the injection itself (I was terrified of needles!!) but seems to be going well. I get a slight redness and itchy feeling on the injection site but I use a cream I got from my pharmacist called eumovate which really calms it down. I've found that doing the injection after a bath or shower is often better and causes less discomfort.

    Sorry just typing away here!! I hope he, and you, are doing well. Any other questions about enbrel feel free to ask!! :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi lare, how are things with Tom and you? I hope all is as well as it can be. DD
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Hi Lare how are you finding the change now?

    Kayleigh was put on Enbrel when they thought MTX alone wasn't cutting it. But they kept her at the same does mtx wise. They have only now a year later just reduced it the MTX but she is still having both which she HATES as it stings her so much :(

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