MTX & blood tests -how often?

TPM Member Posts: 3
edited 8. Oct 2014, 01:34 in My child has arthritis
Hi I'm new here! My 5 year old daughter was diagnised with jra in April 2011 when she was 2.5. We were very lucky and it was just in her knees and other than 2 x 48 hour flare ups, she had no pain or restricred movement. They eere very swollen tjough and by thr august the worse kneevhad caused a slight leg length difference so at the end of September that year she had steroid injections into both knee. These worked well and the swelling has never returned but in March last year uveitis was found in her left eye at her routine eye check. This was such a shock as she was ana negative and the GOSH rheumy had given us the false sense that the injections might put the whole thing to bed and it may never come back.
Since then she has been on steroid drops in the affected eye ever since. We tried to come off them once for 2 weeks but it flared back up and every time we've dropped down to every other day its flared up again. So now the opth at GOSH wants to put her on MTX. I was dreading this but having read some posts on here I already feel a bit better about it.
So it would be great to hear from anyone in a similar position. I know we're so lucky that she is as unaffected as she is but that kind of makes it harder to see the sense it putting horrid chemicals in her body - even though I know its what's nfor the best long term.

also can anyone tell me how often I can expect her to need blood tests once shes on it please?

thanks, jess


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am so sorry that you have had to find us, arthritis is cruel enough for adults but for the very little 'uns? It's utterly unspeakable.

    I cannot guide you about the frequency of blood tests for children (I don't have any) so I would advise you to contact the rheumatology team that are looking after her. I can understand your fears about the meth, for some it can be a rough experience but the parents on here have many tips and hints about how to deal with it. I know from my own experience as a very sickly child (caused by other auto-immune troubles) that children can be remarkably stoical, it's the adults around them who are able to fully appreciate the risks of meds etc who fret; the children just get on with things. I wish you, and your little girl, well and I hope that some parents drop in and see your post. This tends to be one of the quieter forums (obviously, parents are always busy) and the week-ends are generally quiet too. If you feel in need of support please feel free to post on the Living with Arthritis board, because you are. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
    Hello Jess, Like DD, I'm another who is not the parent of a child with arthritis but I have had it myself since I was 15 and, as a mother and grandmother, I feel for parents who have to cope with the diagnosis of RA in a small child.

    I can understand the shock of the uveitis diagnosis and the difficulty in accepting that methotrexate might be needed. I think, as a parent, one hopes for the best and, I guess, the 'best' probably seemed to have happened when the steroid injections appeared to work.

    I would hate to have a diagnosis of arthritis in either on my two grandsons but, if it happened, I would be encouraging their parents to get them on methotrexate. We all fear taking it to some extent but it has done a great job for me for 13 years. When I was first diagnosed, back in 1961, there were no DMARDS available. As a result, I now have replacement knees and hips, and other joints look decidedly wonky. With luck, you can save your little lass from this.

    It will be very hard. I quite understand the horror of putting powerful meds into beautiful little bodies (I've just skyped with the 4 yr old) but this disease is powerful too and they are what can hold it at bay.

    I doubt anyone can tell you how often the blood tests will be as hospitals differ. Possibly fortnightly at first then tailing off once she seems to be coping OK. Mine are now every two months. They do have small needles for little people.

    DD is right. This forum tends to be quiet because parents are busy people. Most forums are quieter at weekends. I hope some parents will be along soon but, whether or not, we are here to help in any way we can.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • TPM
    TPM Member Posts: 3
    edited 30. Nov -1, 00:00
    Thank you both for your replies. We'll see how the next few months go. It's good to hear from real people who take MTX and still recommend it with or without side effects.
  • worriedmum
    worriedmum Member Posts: 72
    edited 30. Nov -1, 00:00
    Hi there,
    My daughter has had JIA since 2 and Uveitis since 4. Now almost 8 she is on MTX and Humira plus others.
    The MTX was given as a liquid, which gave her tummy ache, tried tablets - too traumatic and more recently as sub cut injection - much better, no side effects!!
    If there are any specific questions or problems you face which I can try to help you with, do get in touch. I'd be very happy to help.
  • DaddyM
    DaddyM Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Jess,

    My 4yo daughter has been on sub-cut MTX injections for about eight weeks. For her, the blood tests were initially every week and then tapered down, to fortnightly (and eventually monthly, I think).

    She hates having the injections, but gets over it in about 10 seconds.

    Luckily, she goes to the local clinic for the blood tests after school, so it's not too inconvenient. They managed to lose some of the sample last time, so they didn't get a full set of numbers. This coincided with her complaining about aching knees and jaw...

    Good luck
  • moorehouse
    moorehouse Member Posts: 9
    edited 30. Nov -1, 00:00
    Hello we started off 2 weekly but very quickly went to monthly. The community nurse comes to our house to do them before school which is fantastic.
  • Rafique
    Rafique Member Posts: 2
    edited 30. Nov -1, 00:00
    You can started MTX without any hesitation. like you I was very much anxious about starting MTX for my 7and 6 month daughter. I have studied and read out many publication and learn from parents who are replying in different forum like this.
    Finally we started MTX and no complexity, still OK.
    MTX is the most effective drug for JIA and no alternative. Some drug, steroid can be given with MTX.

    No tension but keep your eyes on your daughter during MTX and if found any complexity just let you know your rheumatologist immediately.

    All the best and good luck for your daughter.