My daughter has JIA...

evz1976

Morning all,

After six weeks of the usual MRIs, x-rays etc my daughter was diagnosed with poly JIA. She had steriod injections and fluid removal a couple of weeks back and has started her first does of methotrexate. I have a few questions that I wonder if any of you may be able to help me with:

(1) The steriod injections had an immediate effect and Charlotte was running around like she used to. Today - two weeks after the injections - she was a little stiff this morning when she woke up. Is this to be expected? we had naively thought the injection and methotrexate would stop all the limping. She is down for some physio next week so I'm hoping that will help.

(2) How typical is it for someone with poly JIA at 2.5 yrs to have this disease for the long term i.e. until their adulthood? I know we are always dealing with percentages but want to know how likely it is she will have this throughout her childhood.

(3) Does anyone have any good news stories about children with ply JIA being free of the disease in a matter of years? After initially being really positive about this I, not my wife, have had a bit of a wobble in the last few days.

Thanks, Simon Evans, Muswell Hill.

LignumVitae

Hi Simon and welcome to the forum.

I'm so sorry you had to find us. I really hope for the best for Charlotte.

I'm not able to fully answer all your questions but I will have a go -

Steroid injections tend to work by giving you a drop in inflammation and this slowly wears off as the steroid drops out of your system - this takes around three weeks for me so two weeks is probably to be expected in one so young. With the methotrexate it takes a while for it to build up in the system and become effective, up to three months for adults (I assume similar for children but maybe quicker). Trying to remember back, I think it was about 8 weeks for mine to kick in. If you notice that Charlotte gets stiffer over the coming weeks it may be worth contacting her rheumatologist and asking for their advice, in my case I am usually offered a further steroid jab or even oral steroids.

I'm not surprised you have had a wobble, this is a huge amount for you all to face and deal with. It's great that you have come here to ask questions. I don't know lots about JIA but as with all auto-immune arthritis there is a huge range in terms of good news stories to buoy you up and bad news stories to scare you (avoid google would be my advice especially during a wobble). There are people on here who had JIA as a child and have arthritis as an adult and there will be people who had it as a child, it cleared up and they aren't on here to tell you! I have a personal friend who did have it and it went into remission never to reappear so there's one story for you. The thing is, there is no way of knowing how Charlotte's arthritis will behave from other people - arthritis does very different things in people. The resources section on this website might be a good place for you to look for some reassurance and ideas.

As a 35 year old with arthritis I can tell you that life isn't one long painful experience, there are good times and bad times, I have a unviersity education, career and family, I have rock climbed, ice climbed, surfed, travelled and had much fun all whilst having arthritis.

Good luck to you all. I hope the meth soon kicks in for Charlotte, it has worked wonders for me.
LV

stickywicket

Hi Simon. I'm so sorry to hear of your little girl's diagnosis but much better to get it and get her on the right meds quickly.

As usual, some excellent advice there by LV. I'd just add that steroid injections, whether into specific joints or just the general ones (usually in the bottom) are a lottery. For some of us they work well for weeks. For others they do very little. Methotrexate can take up to 12 weeks to kick in which is why the steroids are given in the hope that they will tide patients over this initial period.

You are right about percentages. I don't think there is any answer to your question about Charlotte's long-term future. We all live with uncertainty which is hard enough for us adults but even worse when it's your child who is affected. This is what the Arthritis Care booklet on Polyarticular JIA says:

“The sooner your child is treated, the better. About half of children will have symptoms for at least 10 years. At least a third of children will have arthritis lasting into adulthood – this is most likely for children with the RF positive form of polyarticular JIA. A few young people with polyarticular JIA may need to have damaged joints replaced, lthough with the earlier use of the new drug therapies this likelihood will hopefully reduce.”
http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies

Here, also, are some stories by young patients themselves. (Go to 'Related Links' on the right of the page – the three bottom ones.) http://www.arthritiscare.org.uk/LivingwithArthritis/Youngpeople

iluvhobbits

Hi Simon,
I haven't checked the forum for a while but had a look today and saw your post and thought I'd reply.
Firstly can I say I'm sorry to hear about your daughters diagnosis hopefully the methotrexate will soon start to work (although I think it can take up to 6 weeks) and you'll see an improvement.
My daughter was diagnosed with poly JIA at 14 months old and she is now 16 years old,
I wish I could tell you that the arthritis had gone away but unfortunately it is still hanging around! It has only ever effected her knee and ankle joints and over the years she has been prescribed various anti-inflammatory drugs, had several steroid injections directly into the effected joints and has been on methotrexate for about the last 5 years with great results. It seems now that they prescribe methotrexate much sooner for children which I think is great as it will help prevent any joint damage. From my daughter's experience the steroid injections usually lasted about 6 months before symptoms returned but since she has been prescribed a 17.5mg injection of methotrexate joint injections have not been required. The physiotherapist will show you lots of exercises to do to help with easing movement and strengthening muscles which should be done on a daily basis. Try and get your daughter swimming regularly as this is an excellent form of exercise for arthritic joints and can just be a fun family thing to do anyway.
Over the past 15 years my daughter has had periods completely off medication when we thought she had grown out of arthritis only for it to flare up again which can be very disappointing. She has always stayed positive and had less days off school than most of her friends! Her last flare was 18 months ago when she had been symptom free for 2 years whilst taking 17.5mg of methotrexate so the consultant suggested reducing the dose slowly to see if her body reacted. Unfortunately when she got to the reduced dose of 10mg the arthritis flared up again and she required steroid injections into her knee joints and the methotrexate dose was increased back up to 17.5mg. She has now been well again for over a year on this dose so the consultant will consider reducing the dose again sometime next year and we'll just wait and see what happens.
My daughter has coped really well all through school (I know you haven't got to worry about that yet) and hasn't let it stop her doing anything, although she might suffer for it a bit the next day! She is now studying A Levels and picked PE as one of her options and is hoping to go to university with or without her arthritis (who knows what the future holds).
If you haven't already got a copy I would suggest getting a book called Kids With Arthritis by Carrie Britton, there are details on the Arthritis Care website, I have reached for this several times over the years as it is so informative. Another great website is the ccaa.org.uk we attended a fantastic weekend away in the New Forest a few years ago which they organise, it gave us a chance to hear talks from medical professionals and meet other families with children with JIA and the kids have great fun too (even the toddlers). They are already advertising their 2015 weekend on their website so have a read yourself.
I hope this has been of some help, we've lived with JIA for over 15 years and it hasn't been all bad.
If you have any questions that I might be able to help you with please get in touch.
Best Wishes,
Sandra