Hi, Welcome!

The community is a safe space for people living with and connected to arthritis to ask questions and share experiences. Get started by registering here and posting your first comment or question!

Sign In with a Versus Arthritis account

However your life is impacted by arthritis we want to understand more about you so that we can make sure we continue to develop our information, support and services such as the online community.


If you've not already, please take 5 -10 minutes to fill in our survey. All information you provide will remain anonymous and be treated in the strictest confidence. TAKE OUR SURVEY

My little girl has JIA & is about to start Methotexate

loopyluce83loopyluce83 Posts: 6
edited 24. Nov 2012, 18:18 in My Child Has Arthritis
Hi everyone.
My little girl is 6yrs old & has been diagnosed with JIA. She was admitted into hospital on 12.09.2012 & was given 17 steriod injections. She is about to start Methotrexate.
After the injections she had a flare up in all the joints in her hands so they made her splints to sleep in.
This is all new to us & could really use some advise as the hospital has not given me a choice they have just said she has got to have it.

Comments

  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Hello Loopyluce. I'm very sorry to hear your little girl has JIA. I'm not the parent of a child with arthritis but I've had RA myself for over 50 years, since I was 15.

    It must be a very scary time for you and, at first, methotrexate sounds like a very scary med. However, it's one of the most tried and tested of the Disease Modifiers (DMARDs) so it is usually the first one they go to. It has worked well for me for over 10 years. While taking it, your little girl will be well-monitored regularly so that any potential problems can be picked up straightaway - maybe, even, before you've noticed anything wrong.

    I hope some other parents will come along soon as I'm sure it'll be more reassuring for you to read their stories. However, weekends can be a bit quiet on here. In the meantime, you could read some of their posts and also, if you go to 'Pubclications and Resources' at the top of the page, you might find some of the info there (menu on left) useful.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello loopyluce, it's lovely to meet you. I am not a parent but I am someone who takes meth and I have had very little trouble with it. I do occasionally feel extra tired the day after I have it (and I feel better in myself when I have to stop it due to a bug or infection) but that's it.

    Meth is one of the first meds to be tried and there are many children who take it. Your hospital doesn't appear to have given you much in the way of information and / or support which is disappointing so I hope we can plug that gap. I wish you and your little one well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • loopyluce83loopyluce83 Posts: 6
    edited 30. Nov -1, 00:00
    Thanks for the replies, No the hospital gave me a leaflet which really scared me but other than that they have told me i have no choice she has to have it. So thats it, they have said regular bloodtests every 4 weeks. They haven't told me if shes immume to chicken pox or anything all they said is she has an antibody in her blood (ANA) & shes blind in 1 eye which is connected. Shes had it from an early age & the last hopital failed to diagnose her. I hate seeing her in so much pain.
    Thanks again
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Poor little lass! She's really going through the mill, isn't she? And you, too, I imagine.

    When she starts the methotrexate she/you will be given a little booklet in which all her blood test results will be recorded and you'll need to produce this every time she gets another meth prescription so that the latest test results can be added and monitored. If they don't give you one, please ask.

    I would also ask about the chicken pox thing. I know that, as an dult on meth, I'm advised to keep away from anyone with chicken pox until the spots have all scabbed over. I don't know what children are advised as, obviously, they are more likely to come into contact with it. I think there's a vaccine they can have. Please ask about it and please do keep in touch. It must be so hard for you.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • loopyluce83loopyluce83 Posts: 6
    edited 30. Nov -1, 00:00
    It's very hard for us being new to it all, My little girl seems to be coping more than i am. She still has to go to school which is scary as she will pick up every bug & infection going,
    Thank you for your advice it really does help. The hospital does not tell you about others, they just expect you to deal with it.
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Yes, I'm afraid children do pick up infections easily. (My son calls our grandson's Day Care 'The Little Germ Factory' :lol: ) I don't know what you've been told about this. Many people are told to not take their meth if they have an infection as this enables the body to fight it more easily. Your little one sounds like a real trooper. You must be proud of her.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • iluvhobbitsiluvhobbits Posts: 40
    edited 30. Nov -1, 00:00
    Hi loopyluce,
    I am really sorry to read your post, I can totally sympathise with you, my daughter is now 14 and has had JIA sine she was 1 year old, we have had many ups and downs over the years with periods totally free from arthritis only for it to 'flare up' again :( After much consideration she finally started taking methotrexate just over 2 years ago, firstly in tablet form and then she switched to injections which my husband was trained in doing. Methotrexate has really suited her, she hardly suffers from any side effects and picks up less infections, coughs and colds than most of her friends, her attendance at school was 96% last year which I thought was a great achievement.
    I hope you find that Methotrexate is as successful with your daughter, all we want is for our children to be pain free and have a normal childhood and appear no different to their friends, Methotrexate has provided this for my daughter, I truly hope it does the same for you.
    Best Wishes
    iluvhobbits
  • loopyluce83loopyluce83 Posts: 6
    edited 30. Nov -1, 00:00
    My little girl had her 1st injection on 06.11.2012. It was the hardest thing i've ever had to watch. Thank you, she really is brave. She does have a cough at the moment. But i really hope this works & she goes to school & pick's up less infections just like your daughter. My little girl has missed so much school due to all the appointments as the last hospital failed to diagnose her. She has never been able to fight infections in the past. Even the slightest cold tends to take 3-4 weeks for her to get over. All I want is for my baby to be pain free & live as normal life as possible.
    After her injection she seems to have the runs, dont know wether this is just her body reacting to the meds.
    Thank you really for all your support, It really means alot. I dont think I would of been able to take her without your stories & advice :)
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    I hope she's feeling a bit better by now, loopyluce83. You too. What a traumatic experience! Meth usually takes a while to work but, with luck, it won't be long. I hope she's soon feeling the benefits.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello loopyluce, well done to you and her, that is the first hurdle cleared. I've not had the runs with meth but these meds can affect different people in different ways. I hope that her tummy has settled and that she is as OK as she can be. When is her next injection due? I don't mean to sound alarmist but it may be worth keeping a record of what happens and when so that the medicos have an account of effects if needed. I used to remember what happened when but now? I don't. :oops: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • loopyluce83loopyluce83 Posts: 6
    edited 30. Nov -1, 00:00
    Hi,
    My daughters next injection is due 13th nov 2012. Last night was so bad, she was throwing up yellow throffy stuff. She was so brave. She's very pale all the time & has gone off her food. Are these normal symptoms being on Methotrexate.
    Thanks Loopyluce83
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    As DD has said, these meds affect differen people in different ways. I suggest you ring your rheumatology helpline before her next injection just to check that they want you to go ahead. They may conside it's worth persevering at this early stage or they may want to change it or add something. Try not to worry. :roll: Even if meth doesn't suit her, there are plenty of other meds out there. Sometimes these things take time and that is the hardest part. (())
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dibdabdibdab Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi there,

    I don't have a child with JIA, though I have RA myself- I took methotrexate for a while, and once my system got used to it I was really well apart from the day each dose. As the others said- keep talking to the rheumy nurses- they are mine of information and often pick up things that need sorting, or just allay our fears.

    I really just wanted to say hope it goes well for both you and your little treasure- I teach little ones and often marvel at just how resiliant they are- and she is very lucky to have a caring mum like you to cherish her, care for her and fight for her.

    Deb x
  • MumVMumV Posts: 71
    edited 30. Nov -1, 00:00
    Hello loopyluce83,

    hi my daughter has JIA and I wish there had been a forum like this, when she was diagnosed. the best advice I can give you is keep asking questions, don't hesitate, especially if your little girl is unwell, and in the early days. Rheumatology nurses are excellent. The hospital act quickly with children, they will want to get her on a stable medication as soon as they can for her to get back to normal.

    Methotrexate has been amazing for my daughter, the tablets made her feel sick and so she opted for injections one a week on the same day, this is to keep the level up in her system. She still feels sick on the morning of the injection. Without it (or another disease modifying drug), the options are joint injections, and steroids which are not good long term, but are useful initially and at other times, without anything joint damage. If she feels ill, eg with ear infection she will miss the methotrexate for a week to let her body fight the infection or take an antibiotic, as she was advised by the doctor.

    The level of Methotrexate is introduced/increased gradually and decreased gradually if taken off it.
    Her blood is monitored every 2/3 months(hospital will advise) and she has 6monthly Rheumatology consultation, as a child this was a whole team of specialists, consultants,nurse, physio they all attended every clinic. Well looked after....I should have asked more questions.

    You have a very brave little girl. You need a massive hug, it is very scary, and horrible to see your child in pain. My daughter is now 19 and is at Uni, she climbs mountains, walks and hopes to climb, her advice I know would be, keep busy, surround yourself with friends socialise, keep,warm and be happy, laughter, that is definitely the best tonic, it has made her feel well. Thank you medical science for allowing my daughter to control this disease.
    My daughter is my heroine, only about 12,000 children are diagnosed with JIA, to me my daughter, as is yours is one in a million, and even though she is no longer classed as a child she will always have JIA, she likes the idea that she is an eternal Juvenile :D Don't look too far ahead, enjoy something of every day, no matter how small,even the hospital visits, a new book to read or a drawing to do. If there are days you can't do what you had planned, do something else. Positive thoughts are with you in these early days, I have shed many tears, and still do. Don't be afraid to ask questions. What a lovely mummy you are, look after yourself too. Kind regards.
Sign In or Register to comment.