Wow, we're not alone!

Options
Pebs
Pebs Member Posts: 3
edited 14. Apr 2011, 18:01 in My child has arthritis
Hi! Newbie here, I have 3 daughters and Daisy, the youngest at 9, has been diagnosed with JIA for the past 2 years.

It's been hell really, after the initial relief of the diagnosis (after being told it was probably leukaemia!), 18 months of treatment but essentially being ostriches we are having to face up to the fact that life as we know it, and life as we hoped for her has changed forever.

She started on steroids and Methotrexate which worked beautifully. It took a long while to get her off the steroids but we had a brief but happy period of remission. Then it flared worse than ever and funding was approved for Enbrel. She started this about 6 months ago and again it worked really well initially (much quicker than we were lead to believe) but the effect started to tail off as they did with the Meth. Then she started to get awful itchy rashes and scratched herself raw all over her body. Enbrel was stopped and we are in no-mans-land at the moment.

She has the dreaded A in just about every joint, recently it has started in her chest wall too causing horrific chest pains. First time that happened resulted in some 'spirited' driving to A&E as I was quite convinced she was having a heart attack!! Today the pains are in her shoulders, hands, wrists, feet, tomorrow it might be her neck or her jaw or her hips. Every days a lottery!

Since ending the Enbrel she's flaring badly but all we can do is give her painkillers and the weekly Meth injection. Our consultant is trying to push another treatment through our local PCT but I have no idea how long that will take, especially as it's not licenced for children. He mentioned a 6 weekly drip treatment but I have no idea what that is...anyone know?

It's SO lovely to find other people who know what I'm on about. I don't really talk to people about it as everyone thinks arthritis is old people with wonky fingers. I work full time doing grim shifts and I won't lie, I've been off for a while as the reality of it all has hit home and I'm struggling to come to terms with it all.

Anyway, hello all :)

Comments

  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Options
    Hello and welcome. I'm Michelle mum to 4 and Kayleigh my 5 year old has JIA. She's my 3rd and like you I've found it very touch coping. I'm back on anti-d's (I had PND) and the last few months have really gotten to me and I'm not coping anymore so I totally know how you feel hugs.

    Kayleigh is currently on methotrexate and Enbrel combination and for the moment it's working. Like you MTX didn't work very well on my daughter and after steroid injections in 7 joints which lasted only a few weeks that's when they started her on Enbrel.

    I would have thought a 6 weekly drip could be a steroid infusion or something similar (my daughter has had 2 of these and although they half worked for her for about 2 weeks it soon came back :( I think there are other drips they give but not sure on all the different ones.

    Like you everyone who hears she has Arthritis I get that surely not that's for old people then when they realise yes it is they don't know what to say or do with her :(

    Still we're all here to help each other and listen etc. There are some great people on here :D

    Michelle xxx
  • anita01
    anita01 Member Posts: 43
    edited 30. Nov -1, 00:00
    Options
    Hi, a 6 weekly infusion may be one of the anti TNF drugs, My daughter is waiting to hear about funding for Infliximab, As you say alot of the newer drugs are not yet licensed for kids, but can be given under "exceptional circumstances" ie , nothing else helping .... Arthitis research website has good drug info leaflets to read or download too.

    Best wishes,
    Anita
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Options
    Hello Pebs and welcome on here - I am wondering if your infusion is Tocilizumab? If it is my daughter, Annie (incidently also the youngest of three girls, age 6) started these in January. It's a very new treatment and Annie has the Systemic form of JIA and is has been great at switching off those symptoms - no rashes or temperature since starting them. She was having a fortnightly infusion but we are now trying the first one four weeks apart. Her joint disease has still been giving her pain as she has been coming off oral steroids. So last Friday Annie had joint injections under general and has bounced into school this morning! She also had to have an ultra sound on her shoulder and arm due to a strange swelling - the Dr is wondering if it is her Arthritis. I feel she is riddled with it at the moment as she complains about her kneck and back hurting, although the Tocilizumab is working I still feel anxious. We have been "at this " now for nearly a year and half. Like you, we had the Leukiemia check as well and it is all very scary. It certainly does take its toll. Your poor daughter sounds like she has been really suffering and its so frustrating and heart breaking watching your child go through this. I hope you get your funding - I feel very lucky that we had no issue on this, we only had to wait a few weeks - apparently the infusion costs a similar amount to Embrel injections which did nothing for Annie.
    Good luck and hang in there and make sure you look after yourself you have a lot on your plate.
    Lucy
  • Pebs
    Pebs Member Posts: 3
    edited 30. Nov -1, 00:00
    Options
    Thanks for the replies :)

    We've had some positive news, they're putting her back on the Enbrel along with aggressive treatment for the allergic reaction (steroids and flixo-something). Failing that then she's going to GOSH for one of their cocktails that they'll only do there. The warm weather has also worked its magic and she's having a lovely period of respite, much needed by all of us!
Back to top

Categories