Sharing experience

moorehouse
moorehouse Member Posts: 9
edited 19. Mar 2014, 18:57 in My child has arthritis
My 4yr old son was diagnosed with systemic JIA 18 months ago. He has been on metotrexate for 13 months but has has 3 flare up's requiring IV steroids.

He finished a course of steroids 10 days ago and tonight
has typical systemic rash and joint pain and swelling. I am hoping to hold out until morning as he is due bloods anyway. He also has small purple bruise like marks on his feet.

I dont really feel the metotrexate is doing much for him.

I would love to hear other peoples experience of SJIA in a young child.

Comments

  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    Hello moorehouse. I'm so sorry to hear your little lad is having a tough time of things. I'm not the parent of a child with arthritis though I am both a parent and grandparent and have had RA myself since I was 15.

    As you will realise parents are busy people and I guess parents of children with arthritis are even busier. Usually one or two will pop on to answer questions but, if not, one of us 'older hands' sometimes jump in.

    If you read through posts on here you'll see that methotrexate works well for some but not others. That's the same in the adult world too. I hope that, by now, your little fellow has seen his rheumatologist and a plan has been formulated. There are other possibilities if the meth is deemed unhelpful for him.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lizajane10
    lizajane10 Member Posts: 16
    edited 30. Nov -1, 00:00
    Not a young child but my 15 year old has systemic onset JIA diagnosed in January. With him methotrexate helped but he still needed prednisolone. About 2 months ago he started Enbrel (etanercept) as well, and it seems to be working very well. He is now down to 2mg prednisolone a day and hoping to come off it completely in the next month. I found reading up about Enbrel rather scary but I have to say it seems a much more sophisticated drug than methotrexate and it really isn't giving him any side effects. On the downside he now has 3 injections per week. Work looking into if this is suggested as a next step. It is very expensive though and we had to wait several months for the funding to be approved. Also it has to be kept in the fridge.
  • moorehouse
    moorehouse Member Posts: 9
    edited 30. Nov -1, 00:00
    Thanks for the replays. We saw the Rheumatologists on Friday. He wants us to consider either Tocilizumb or Anakinra. They both seem a massive forward step and equally as frightening.

    I would love to hear of your experiences with these two treatments.
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    I agree they seem a massive step forward. It's usual to have to 'fail' on three DMARDS before being considered for an anti-tnf such as the two you mention. If your rheumatologist wants to go straight for one of them after methotrexate the feeling must be that your little lad's arthritis warrants them.

    Everyone has some trepidation when faced with DMARDS and anti-tnfs. They do seem like the big guns – as indeed they are – even for us adults let alone a small child. However, uncontrolled arthritis is also a big gun so the choice is a difficult one.

    Have you thought of ringing our Helpline to talk things over? They can't advise you what to do but might have some info which would help you make your choice.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • moorehouse
    moorehouse Member Posts: 9
    edited 30. Nov -1, 00:00
    After much discussion we have opted to keep my son on steroids and see what happens when we start weaning again. Tomorrow is our first week of weaning. In the past he has been fine until we get down to 7.5mg . I feel like a gambler "one more try maybe this time it will work"

    If he can't manage off the steroids then we will opt for Toczilimab. I was pleased to learn that he could have a portacath inserted. He has become very needle phobic over the past 17 months.

    Wasn't the start to school life that I'd hoped for but he was very happy as he went for his first day.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Your lad has a deal on his little plate, doesn't he? I weaned myself off steroids but it took a very long time, nearly a year. By how much do you reduce at a time? I did it in very small steps, between 0.5 and 1.0 mg per week, spending at least three weeks on the lower dose before reducing again. It was tough once I reached the lower levels but it can be done. I wish you all well and I hope he enjoys school - that's a big step in a young life, no? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • moorehouse
    moorehouse Member Posts: 9
    edited 30. Nov -1, 00:00
    We are down to 7mg on steroids from 10mg and already he is struggling. Had rash and joint pains over the weekend and generally miserable. His blood levels are still showing his inflammatory makers as raised.

    I guess he is telling us its time to move to the next treatment. On a positive note he is really enjoying school.
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    I think you're right. These things always seem a big decision even for us adults, all the more so for parents of a young child, but it would appear that his long term future requires it.

    I'm so pleased he enjoys school. That, too, is a big step for both parents and child.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • moorehouse
    moorehouse Member Posts: 9
    edited 30. Nov -1, 00:00
    Well the time finally came! Toby became unwell again so he started Toczilimab last week. It was one of the hardest decisions to make. Although in the end he so so I'll we didn't really have a choice.

    It all went very well. He was so brave and mature about it. He just kept saying he wanted to be well and run around like his brother. It's early days but the day after his first treatment we walked down the stairs something he hadn't done for a long time. He is still on high dose steroids and methotrexate so we won't know for sure for a while.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    It is sometimes very surprising in how stoical poorly children can be. I hope he soon gains some benefit from the Toc - I can appreciate how tough a decision this must have been for you, adults too cavil about these meds. Please let us know how he gets on, yes? I wish you and him very well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    Well done, Toby! I do hope this med continues to help and enables him to feel 'normal' again.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • moorehouse
    moorehouse Member Posts: 9
    edited 30. Nov -1, 00:00
    Thought I would give you an update on Toby. He has been onToczilimab
    Now for 4 months. He has it every 2 weeks. It's going very well. We haven't noticed any side effects. Has such a good quality of life now. He has even started playing rugby and we did a 5 mile walk last week.

    Another milestone was finally coming off steroids. After a whole year on them.

    I still worry about the long term implications of this drug but seeing him well and active is more important.

    Came across a review of a book called "The autoimmune edidemic" has anyone read it?