What have parents been told about stopping Methotrexate?

iluvhobbits
iluvhobbits Member Posts: 32
edited 25. Apr 2012, 16:36 in My child has arthritis
Hi,
I just wondered what any parents have been told about how long their child needs to take Methotrexate for?
My daughter has been on Methotrexate for 18 months and has been symptom free since April 2011 when she last had steroid joint injections into her knees. At her hospital appointment on Monday we asked the consultant when she could cease taking Methotrexate (She takes 17.5ml by injection) as she is doing so well, we were told she needs to be symptom free for 2 years so they wouldn't consider stopping the injections until at least April 2013. This would be done under careful consideration as she would then be in the middle of her GCSE's and they wouldn't want her arthritis to 'flare up' and effect her school work. My friend whose daughter also has arthritis and takes Methotrexate but lives in a different part of the country has been told that Methotrexate would be stopped 1 year after being sympton free. I am just interested to know what any other parents have been told. Why does there seem to be different answers depending on where you live?
Thanks

Comments

  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    We were told 2 years when living in the USA.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    we've not been told anything but after a year on Enbrel and MTX together they reduced MTX she had been doing well but last couple of months haven't been at all good and she's in a lot of pain again :(
  • Shanedegs
    Shanedegs Member Posts: 6
    edited 30. Nov -1, 00:00
    My 10 year old daughter has been on MTX for two years and Enbrel for 1year. We were originally told two years for MTX but not given a time scale for Enbrel. Her MTX was reduced to 10mg 4 months ago and Enbrel increased to 25mg. We have changed from injection MTX to tablet which has made things worse as she now finds it really difficult to take any tablets. She fits physically when we try to administer the Enbrel injection.She has been doing really well physically. She has been relatively pain free for 6 months but struggles taking her meds and has had Psychology treatment to try and help. We have recently got to the point of her refusing to take MTX and Enbrel. It is a massive battle each week and the trauma and upset she goes through is heart breaking. It's really frustrating when clinic won't give clear timescales for taking meds and more recently cancel appt. We are at a bit of a loss at the mo. I'm glad I came back to the forum for some contact and info from others going through similar.
  • iluvhobbits
    iluvhobbits Member Posts: 32
    edited 30. Nov -1, 00:00
    Thanks for reading my initial post. Sorry to hear your daughter is going through a really bad time taking her meds, have you tried a 'Buzzy' for easing the pain of the injection? My daughter is 14 and hates having her Methotrexate injection once a week so I purchased a 'Buzzy' online and it has made things slightly less traumatic each week.
    I hope you are able to get some help and advice from the hospital.
    Best Wishes
    Sandra

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