Here we go again!!

iluvhobbits
iluvhobbits Member Posts: 32
edited 12. Sep 2013, 18:49 in My child has arthritis
Hi,
Sorry haven't been on here for a long time but looking today for some parents going through the same thing.
My daughter is 15 and has had JIA since she was a year old, over the past 14 years we have had many ups and downs and periods of her being absolutely fine and completly off medication.
My daughter has been taking Methotrexate for the past 3 years with brilliant results. As she was not showing any signs of active disease the consultant has reduced the Methotrexate injection from 17.5mg slowly by 2.5mg per month to an amount of 10mg which she has remained in for the last 6 weeks. She has had regular monthly blood tests which have shown no signs of inflammation. Unfortunately last week things changed and she started to complain of pain in her right knee. My daughter opted to take GCSE PE as she loves sport so has several PE lessons per week at school, she says she noticed she was unable to pull her leg back very far for the warm up/stretch exercises as it hurt too much when it reached a certain point. She took part in long jump last week and her knee was very sore the following day so today she told the teacher she was unable to participate (the school have always been very understanding). I noticed at the weekend whilst she was wearing shorts that her knee looked very puffy and swollen but I didn't like to point this out to her as I know how sensitive teenage girls are about their bodies.
We have a routine appointment with the consultant in 3 weeks time so we can discuss our concerns then.
I just hoped this time she might have finally grown out of this disease but it just seems like everytime we get our hopes up it seems to comes back again.
Has anyone got a teenage son/daughter with long term JIA who has been through similar ups and downs?
I would be pleased to hear from anyone.
Thank you.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I don't have a child with JIA but I am an adult with an auto-immune arthritis. Obviously the ideal is to take as little amount as possible of the meds but sometimes they are reduced too low so the arthritis re-appears (it's never gone, as such, only suppressed). JIA may be different in that one can outgrow it and it could be that she just isn't at that point just yet. It's good that you are seeing the rheumatologist soon, in the meantime keep a note of what happens and when, what helps or hinders, and I hope the rheumatologist will be able to address your concerns. I wish you both well and please let us know how you get on. DD
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi there,
    I read your post with interest as I too have been wondering the same thing. How long does this thing last!!?
    My daughter is much younger than yours, at 7, she has had Extended Oligo-articular JIA with associated Uveitis since 2 years old (4 for the Uveitis) She is on Sc Methotrexate and has just ome off Humira. Today was sports day - what a disaster! She went to school feeling fine, ran a 50 metre sprint (cause she felt able to) and has been crying in pain ever since. We are awaiting an MRI on her left ankle cause she complains of pain on any exertion, even after 5 minutes of walking, even though ultrasound is clear and there is no evidence of active inflammation. She has had numerous joint injections, but repeatedly her left ankel so they wonder if there is a mechanical issue from the amount of previous steroid or if there is any joint damage fro all the previous inflammation even though it's been quickly treated over the years.
    Like you, I keep seeing periods of remission, all beit medically induced, and keep wondering if she is gonna have this hing long term. I have read a few papers which suggest long terms problems for our children, but of course remain hopeful. So, I too would love to hear from parents of kids who are now grown up, or indeed from adults who had JIA as little ones who can share their exoeriences and outcomes. I will watch this post with interest.
    I hope your duaghter has had a comfortable day and her appointment goes well.
    Thanks you for sharing

    Sam. x
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi to both of you,

    Firstly mutual hugs to all mums((())), something we often need as we keep those brave faces going for our children. I say children my 2 daughters are 18 and 20 now...where did the time go!! :?:

    My eldest daughter has had JIA since 13/14 (aggressive Polyarticular and Hypermobility).

    Methotrexate has been her main treatment (steroid injections initially in 8 joints....only once, but again in elbows and knees) and top up predis... Steroid when needed.

    Iluvhobbits... I am really sorry to hear that your daughter is experiencing a problem again with her knee, this did happen with my daughter in high school, especially with her knees...a couple of times, she had them drained and steroid injections on top of her Methotrexate (30mg) at the time.

    My advice would be, don't leave it 3 weeks, unless you are advised by the rheumatology department....

    Option 1: ring rheumatology (in my experience they want children to have the arthritis under control ASAP) you should be able to speak to a rheumatology nurse or secretary???
    option 2: GPs can also prescribe a steroid/anti inflammatory/advise...you are NOT wasting their time.

    My daughter is 20 now, she went off to Uni on 30mg of methotrexate....she's now down to 10 and waiting to reduce more on her next delivery, she is really well and physically active, happy and enjoying studies, student life etc.

    I wonder with your daughter, again from a lay persons point of view, if hormones are now playing a part. I know how you feel about not saying anything to her about her knee, it's a fine line between keeping positive and keeping an eye out for the active Arthritis, and of course the overriding hope of complete remission...which we must keep, but also must educate our children with the correct coping and reaction strategies when something occurs.

    I hope this doesn't sound like a lecture.

    I wish your daughter well and hope that she gets her knee back to normal soon :D it's fantastic she loves PE, and great she keeps acrive :D .

    Worried Mum,

    Poor little mite, she s having a rough time at the moment, I hope your appointments go well also, keep up your positive spirit, a happy fun loving child is definitely the way forward, my daughter prescribes surrounding herself with good friends, keeping active/busy and most of all laughing a lot, (she copes really well),I love both my daughters they inspire me every day.

    PS Hobbits are definitely on my daughters list of favourites too.

    Positive wellness wishes to all.

    Kind regards

    Mum V :D:D
  • iluvhobbits
    iluvhobbits Member Posts: 32
    edited 30. Nov -1, 00:00
    Hi Mum V,
    Thank you so much for your reply & no I didn't take it as a lecture :)
    My daughter is a very sensible 15 year old and after having arthritis for 14 years knows all the signs of any problems and always tells me when her joints start to hurt. She has been taking ibuprofen in addition to the methotrexate but she does says it doesn't seem to make any difference. Over the years she had tried various NSAID's and has had several joint injections into her knees and ankles. I have contact at the hospital with an excellent rheumatology nurse specialist so I have E mailed her just to let her know that my daughters knee is causing her concern just so they are aware before we attend her appointment. She is a very happy, sociable, caring and active teenager, who loves spending time with her friends and family, if people find out she has arthritis they are surprised as they say she always looks so well and happy. It is fantastic to hear that your daughter is now at uni and enjoying life, I do wonder what the future holds but I know whatever comes her way she will take it in her stride.
    Thank you for taking the time to reply, it is greatly appreciated.
    We have a crazy dog called Bilbo who always makes my daughter feel better when she is having a bad day, this is why we love hobbits!!
    Best Wishes,
    Iluvhobbits xx
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi again,

    I posted my reply and then thought about it. :oops: .....you have been living with Arthritis in your family much longer than us, you know more about it than me!! :roll:

    Your daughter sounds great, I believe the arthritis makes them more determined than ever...my daughter is currently on a walking holiday a route written by Wainwright, then she has some field trips for her Uni course, she never stops and is an inspiration.

    When she s home she is the one who takes our 2 daft Black Labs for most of their walks, they love her, great company, as you said with your daughter and Bilbo (great name)!

    She really is hoping to come off the Methotrexate and not have to see Rheumatology for a while, lets hope so.....

    She says she still gets stiff if she sits in one position for too long, or in a car on a long journey, and experienced elbow stiffness after written exams, but it went away and didn't stay bent like when she was originally diagnosed, that was a relief.

    I wish you daughter well for her appointment and her knee.

    Lets keep hoping for better and better treatment, there seems to be a lot of new initiatives and research out there, do you follow Arthritis Care and Research on face book, and worried mum, I find it a nice way to keep up to date and leads to some good and positive links (and where to get involved, if we want to).

    Positive wishes.
    I look in here from time to time so I hope you will post how your daughters are getting on.

    Kind regards MumV
    :D:D
  • Mary29
    Mary29 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi there
    My son was diagnosed when he was 12 years old, so very late in his life, since the age of 7 he had been a very active sports person with football being his passion. Like your daughter he was very sensible and with regular blood test and a low dose of methotrexate at the age of 16 we were told he had outgrown it. However, the 4 years he suffered was a constant up hill battle with his school as the worst joints were his knees, hips and fingers.
    Your family have been battling this for such a long time it must be heartbreaking that this is happening again.
    My son is currently battling the RAF as they have automatically put him as being UNFIT saying he had chronic arthritis and therefore is not fit for service. From the age of 12 he was an Air Cadet and achieved so much with the determination that the illness would never take over his life. Now he is fighting for the one dream he has held onto for all these years. His fighting spirit has come from having to battle all the years he had JIA and I am so frustrated that he has been flying, gliding, shooting, done rugby, football and athletics all to such a high standard he actually ran with the RAF when he was 16.
    I hope the appointment with your specialist goes well and I really hope this is a minor setback. xx
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi Mary 29,

    Your son sounds inspirational, I think it is terrible he is having to battle with the RAF, especially as this has been his dream, and he ran for them at 16,and much more I am sure, it seems wrong that they have allowed him to build hope, and that he has proved himself worthy..good luck to him with his quest, he sounds a splendid young man.


    It is inspiring and hope building for others that your son has grown out of JIA, thank you for sharing his story.

    Once again good luck with his dream.

    Kind regards

    Mum V :D
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
    Hi, I am new here my full intro is in the Hi forum.
    I am 34 years old and was diagnosed the polyarticular JRA when I was 18 months old. As with your daughter I had my ups and downs but the disease has been treated aggressively which means that my joints are still holding in there.
    I have been told that I have a great attitude to my illness but I just shrug, this is all I know. The remissions in my teen years were a window into a life i didn't know, it was a great break (I did camp America, rock climbing and more) but I did't collapse in a heap and cry when it returned it was just what happened.

    I think getting an illness when you are a child makes it part of growing up, yes it sucks but I saw it as one part of me, I couldn't do PE, my friend couldn't draw a decent picture if her life depended of it, we all have strengths and weaknesses. I have always adapted life to fit me and Arthur. When my class went skiing I was official photographer as my doc said I wasn't allowed to ski.
    My attendance was variable in school and I know I didn't achieve my full potential when it came to exam results but with a resit in maths I got into uni for teaching.
    In uni I had to delay my last term but graduated at Christmas instead of July,

    I love my job and have been open with my employers from the start about my illness. Most times it doesn't effect my job directly but when it does I find that the fact that they already know what could happen means that they are great.

    BTW I remember very little negative about Arthur as a child, the pain, treatments etc are not remembered, I remember chocolate biscuits from the nurses and toys in the hospital. My family was always very possitive and supportive around me and it helped a lot, I wasn't wrapped in cotton wool and I was trusted to know when to stop (Apart from football, the Doc had to ban me)

    Sorry for the long post but this is my life condensed. If you have any questions please ask-no limits. I am not a parent but my mum has been open recently to how my diagnosis affected her so I would like to help if I can (and I am on school holidays-body recharge time for me!)

    Thistle
  • iluvhobbits
    iluvhobbits Member Posts: 32
    edited 30. Nov -1, 00:00
    Hi,
    Thanks to everyone who bothered to read my original post and for all your replys, sharing your experiences and words of encouragent, it does help a great deal.
    I thought I would just update my original post,today was my daughters appointment at the hospital with the Consultant, as expected he confirmed that both knee joints have flared up and have fluid on the joints and active arthritis. After unsuccessfully reducing her Methotrexate injections from 17.5mg to 10 mg over the past few months we have now got to increase to 15mg from tonight for the next 2 weeks and then back up to 17.5mg. He also wants her to go in urgently for Steroid injections directly into both knee joints after draining the fluid off the joints first, the last time she had this done was over 3 years ago but has always been very fast acting and effective. The consultant asked my daughter how she was feeling about things and she said "fine" when we got out she confessed she is feeling "really pee'd off!" (teenage speak) She hates having the steroid injections as she says they hurt and is disappointed to have to increase the methotrexate again as the higher dose does seem to make her have more side effects. She does understand that this is all for her own good and she will feel better in the long run so hopefully she can go back to school again in September and participate fully in her GCSE PE lessons again. As a family I think we are all feeling a bit disappointed, we all dared to think that as she has seemed well for so long perhaps she had finally outgrown it. The Consultant said to treat it as a little 'blip', at this moment in time she is not ready to come off medication but who knows what the future holds!
    Best Wishes,
    Iluvhobbits
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Iluvhobbits,

    I am so glad your daughter has told you how she feels, I missed some of that........I really feel for her and you all, I recognise those emotions, in true Human spirit, we soldier on. when extra hugs are needed!!! My support is firmly with you all.

    Best of wellness wishes for this " blip". (My daughter completed the coast to coast)!!! Now she's on a dig!!!

    Than you so very, very much to Thistlegirl, for posting, your "story" is very inspiring, my daughter is now at Uni and loving life, hugs to your mum I can empathise with her. My utmost and heartfelt respect to you and anyone living with "Arthur". Like you my daughter prescribes, keeping busy, happy, laughing a lot and surrounding herself with great people.

    Sorry my reply is short, there is so much more I would like to say.

    Good wishes to all and kind regards. :D

    Mum V
  • mumsaregreat83
    mumsaregreat83 Member Posts: 1
    edited 30. Nov -1, 00:00
    Here we go ago indeed!!
    I am new to this forum and as soon as I saw those words it's exactly what I was thinking. From your unfortunate lengthy experience you sound like u would know exactly what I'm going through.
    My little girl was diagnosed with JIA at 5-1/2 and has after a year methotrexate free it has re-activated!!
    This Thu its back to steroid injections. I called the helpline for the first time today as I'm usually very positive about things and my daughter appears pain free so why is this happening again?? Is the ? That comes to mind.
    From ur experience is it normal to feel more anxious second time round?
    Thanks for any help x
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello mumsaregreat83 and welcome to the forum.

    It must be heartbreaking finding one's child has arthritis and doubly so when it returns after a remission. There is no real answer to 'why is this happening again?' It's happening because it can. The meds dampen down the disease but only rarely suppress it completely. As for pain, I've often found that my own pain levels and disease activity fail to coincide. Theree are many anxious tims with arthritis.

    I'm sorry, I don't understand your sentence 'Is the?'

    I do hope your daughter'a arthritis will soon be under control again.

Who's Online

3
3 Guests