Hi, Iam new here could do with some advice/chat

xxmegan12xx
xxmegan12xx Member Posts: 11
edited 21. Mar 2013, 13:45 in Young people's community
I am new to this and need some advice about methotrexate..

I am 17 years old and have had JIA ( Juvenile Idiopathic Arthritis) for about 3 years now and the pain is beginning to drive me up the wall especially in my jaw. Just been to visit the adult doctor for the first time, and she has suggested methotrexate to help me deal with the pain. Its going to be reviewed in a few weeks about whether to start me on it after some x-rays, so when I go back I am going to be asked whether I am happy to go ahead if it is necessary to take the medicine but my mum really doesn't agree with it, she's against any idea of a drug like that for some reason. I have been told the basic info about it but I am just wanting some general info from anyone who has/is taking it?? because its so hard to make a decision of what to do

Comments

  • stickywicket
    stickywicket Member Posts: 26,623
    edited 30. Nov -1, 00:00
    Hi Megan. I'm not a young person but I was 15 when diagnosed and how I wish methotrexate and other DMARDS had been around then!

    I'm surprised you've had JIA for 3 years and not been offered it though perhaps you are on some other DMARD. Clearly what you're taking isn't working for you or, at least, isn't working well enough if the consultant thinks methotrexate is needed. Personally, I've always been guided by my consultant on these things (and my pain levels :wink: ) as they are the experts. DMARDS do seem very powerful meds, and many are scared of them at first, but then arthritis is a very powerful disease and needs such things to keep it in check. You would be very carefully monitored while taking it.

    Maybe you and Mum should talk things over together and then with the consultant. Or, maybe one or other of you might like to ring our Helpline people for a chat about it. All I can say is that it's worked well for me for over ten years and I know it helps many others on here.
  • xxmegan12xx
    xxmegan12xx Member Posts: 11
    edited 30. Nov -1, 00:00
    I have just been taking very powerful ibuprofen over the years but it isn't working very well, I am just a bit scared about taking something like methotrexate think I will make a list of questions to ask the doctor on new visit hopefully that will help.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Ah, mums. They like to think they have your best interests at heart but there are some things from which they cannot protect their offspring, and that must be very difficult for them.

    This is not easy for either of you, you because you have had a wake-up call beyond reasonable belief, and your mum because she is probably feeling both helpless and responsible. Meth has a bad press but it can help arthritics because it suppresses the immune system: this is the thing that is responsible for your arthritis, an over-active immune system causes the body to attack itself but meth can slow that. Your mum is not you, and never will be: please listen to your rheumatologist and her advice, she has the knowledge and experience. I wish you well. DD
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi Megan,

    I am a mum, my daughter was diagnosed with JIA at13/14.....she had a sore jaw at one point also as well and that is not nice, we need to get you pain free...she had up to 10 other joints affected, she couldn't straighten her elbows and her knees were like balloons........

    I am not telling you this to scare you........where is she now.......she is 20, at Uni, walking, climbing, cycling, laughing, socialising and happy, she is having a wellness spell and it is fantastic.

    How did she get from 13 to 20 without any joint damage, she was prescribed Methotrexate, she was given 30mg which is a low dose compared to the usual use of Methotrexate, but a high dose for JIA.

    She takes it once a week, initially in tablet form.....and yes it can make you feel sicky :mrgreen: on the day you take it, (but a flare can be far worse, and can damage your joints)...when the sickness feeling got too much (after quite a long time) she learnt how to take it by injection, still sicky but not as much :mrgreen:

    Once you start taking it the hospital look after you really well, they also get you to take folic acid.

    My daughter chose her own day for taking it, (they suggested the Friday so if you felt sick it would be weekend!! ) she chose Monday as she said she wanted to feel well at the weekend to see freinds :lol: Good for her!!!

    dreamy Daisy is right.....mums, we can be very strange, in denial I think,
    Before my daughter was diagnosed with JIA , I hated the idea of any strong Medication, having seen my daughter flourish and grow into a wonderfully independent young lady with the aid of Methotrexate, my opinion of the intervention of medical science has definitely changed. I /we listened to our consultant.

    My daughter now, takes the lead in the control of her treatment, on the advice of her consultant and I support her, she is currently on a wellness spell and is reducing her methotrexate, she has been flare free for over two years and so this has been recommended to her. It's really positive and great news for her :D

    So back to you, flare free, arthritis under control, and pain free ( well near as possible) my daughter still gets stiff and achy if she sits too long, but apart from exams I really don't think she is ever still for long!! :)

    Good luck to you, I hope you get chance to really talk things over with your mum. The best advice does not come from another mum, It comes from other people living with Arthritis, as I can not feel your pain. My advice to mums is never underestimate your child's pain when it is caused by arthritis.

    Take care Megan, you sound like a sensible young lady, asking questions is a very good starting point.

    Mum V :)
  • RossM96
    RossM96 Member Posts: 9
    edited 30. Nov -1, 00:00
    Im going to be honest, its a great medication and does a world of good, but sometimes side affects can be pretty bad, the blood tests that come along with it drive me up the wall, but in total id say go for it, it should defo help ya, just pm me if ya ever need a chat bout it, im your age and been on it since i was 12.
  • aboutagirl
    aboutagirl Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi, i was diagnosed with arthritis when i was two, i am now fifteen and have been on and off methotrexate for a while. To be honest, i haven't experienced much benefit from it although i do know others that have thought it was the best medication they had taken. It also takes a few months for it to really start to work so i think you just need to discuss it with your doctor and see what best suits you!
    good luck :)

    -Chloe x

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