11 year old with JIA and thigh pain

Dominie
Dominie Member Posts: 3
in My child has arthritis

Hi - i've just joined the forum as my son has JIA - 3 1/2 years since diagnosis. He was injecting biologics / Humira for 2 years, came off it in May 2020 and now suffers from pain in both thighs. It seems more muscle than joint related - has anyone else experienced the same?

Comments

  • Anna
    Anna Moderator Posts: 1,100

    Hello @Dominie and a warm welcome to the online community,

    I see you've posted in the 'My child has arthritis' forum - that's a good place to hear from other parents who, like you, have a child with JIA. You've probably done plenty of research about the new biologic therapies on behalf of your son, but its always useful to hear from other people's experience too.

    Many of our members are on humira or similar biologics and they too can share their experience of being on them and the after effects if they stop taking them. It would also probably be worth mentioning the pain in your son's thighs to his rheumatologist (this is probably something you've already done of course).

    Since arthritis is a condition associated with age, there are relatively few support networks for parents and children with this condition. You and your son might be interested in a new programme that Versus Arthritis have launched to improve information and support offered to young people. The link is below if you want to read about it.

    https://www.versusarthritis.org/get-involved/young-experts/

    Best wishes to you and your son, do let us know how you're both getting on.

    Anna (Mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Dominie
    Dominie Member Posts: 3

    Thanks so much for the lovely welcome Anna.

  • frogmorton
    frogmorton Member Posts: 30,026

    Hi @Dominie

    Lovely to meet you sorry I don't have any relevant experience, but wanted to offer my support as i do know what it's like to have a sick child. I went through it when my youngest had leukaemia.

    What about posting again under a title like 'Post Humira issues' or something. A lot of us are probably thinking we don't have a child with Arthritis and can't relate, but maybe someone can? Maybe not but might be worth a try.

    Just out of interest has your boy been put on a different medication? and what are his team saying?

    Take care

  • YvonneH
    YvonneH Member Posts: 1,075
    edited 8. Apr 2021, 10:41

    Hi @Dominie

    We have specific information for children with arthritis and a Young Persons and Family Service which will be of interest to you. Here's the relevant links

    https://www.versusarthritis.org/about-arthritis/young-people/living-with-arthritis/

    and

    https://www.versusarthritis.org/about-arthritis/young-people/

    Do look at these with your son, I hope you find some support and help here

    Yvonne x

  • [Deleted User]
    [Deleted User] Posts: 0

    Hi @Dominie

    I am so glad that you have come to the forum about this! I was diagnosed JIA at the age of 6, and although I was never medicated at that point, I do understand the frustrations and the journey from a child's perspective. Please do always chat to any of us, we will always be here to listen, point you in the direction of advice or support where we can.

    You and your wonderful son will never be alone in this!

    Sarah x

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