Methotrexate injections and predinisolone tablets

VikkiCarney
VikkiCarney Member Posts: 2
edited 5. Dec 2017, 10:12 in Say Hello Archive
Hi my 13 year old son was diagnosed with JIA nearly 4 years ago now. It all started in his knees ankles and feet he was given injections in his joints and put on a steroid IV for 3days then started oral methotrexate. All was going really well, they kept him on the methotrexate for nearly 2 years before reducing it as when he started it he could barely walk and in between injections and starting the meds his elbows swelled up. His methotrexate was then reduced and all sorts of problems started and although he is now on methotrexate injections at a much higher dose his legs and feet are not swollen but restricted again, his elbows are both restricted and swollen his wrists, fingers, jaw and more recently shoulders are all swollen and restricted. He is on his second course of steroid tablets since July to try and control it but he is now suffering with headaches and stomach pains. He has always coped so well with his condition but recently (probably partly due to steroids) has started to get really depressed. I feel some useless as a parent who has never suffered with anything like this and any other parents I meet can’t even relate to arthritis in children

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Vikkicarney Welcome to the forum glad you have found us. It's tough when your children are in pain I know because I watch my daughter daily as she trys to live her life working through the pain so I can understand in some way what you are going through. Everyone on the forum is friendly and understanding and will try and help in one way or another. If you feel you want to talk to some one you can ring our help line 0808 800 4050. The forums most popular are Living with Arthritis and Chit Chat.
    All the best Christine
  • frogmorton
    frogmorton Member Posts: 29,403
    edited 30. Nov -1, 00:00
    Oh Vikki

    I am sorry to hear about your boy :(

    I do have some understanding of how you feel, my own youngest got leukaemia going through terrible treatment (lots of steroids and high dose MTX(IV and later on tablets) for two and half years.

    She is now 19 and the treatment (chemos) caused avascular necrosis in her bones. She has had hip surgery and a new shoulder in January.

    It's so hard watching your child suffer - you so wish it was yourself don't you?

    I think as the kids get older they understand more what they are missing out on and get cross about it, (fair enough). Also other kids are less supportive than they were at primary school. My daughter is about to start counselling for what she is and has gone through.

    I sometimes think I need it myself!

    Sending you some ((()))

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello my lovely, I am so very sorry to read your story: I was a sick child and only as an adult did I comprehend the strain that my mother had faced on a daily basis, for me it was life as I knew it (and a very different one to that of my peers). I saw many doctors and specialists back in the 60s and 70s but only one asked how my mother was coping. I sincerely hope that has changed.

    JIA is a difficult condition to understand and I have yet to meet someone who is aware that arthritis occurs in children. I presume that your son is hitting puberty, a momentous upheaval for every child; if this is so maybe that is also affecting the arthritis. He must be in great physical discomfort and this can be a trigger for depression, additionally he may be more aware now as he is older how this condition is unreasonably affecting his life (something that adults on here struggle with). Steroids have a role to play but they bring their own troubles as they affect all body tissue, not just the bad bits.

    We have a My Child has Arthritis board here but it is very quiet as parents are busy: I am sure that members such as me and Frog will support you as best we can, we all get it because we've got it. ((( ))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben