hate this arther

jordansmum
jordansmum Member Posts: 316
i know it's sataday and you won't be able to reply till monday ,but i just don't know what to do .Jordan has been on mxt for 6 weeks without any signs of improvement as yet i know it is still early day's but he is struggling so much with pain and his walking has got so limited before having to stop rest and try to continue so we are limited as to where we can go out. I don't want to keep on hastling the rhummy nurse as last time i spoke to her she told me i had to give it time, but i am finding this so hard i cannot stand seeing him in so much discomfort. We are going on holiday soon and this really concerns me as it is greece so not easy to get help if needed .What can and should i do thanks in advance for any reply.

Comments

  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hello
    So sorry to hear that Jordan is in so much pain. It must be heartwrenching for you.
    I think I remember you posting before that Jordan has had Pred before? Is he still on it? Just asking as whilst I am trying different meds such as Methotrexate and waiting to see if it kicks in or not, my Rheumy recently put me on 7.5mg daily of Pred. and I think it has given me some pain relief. I know I will only be on it short term however am so thankful to get some relief for a wee while.
    Maybe try calling the Rheumy Nurse again and ask them to put their thinking caps on for something to give Jordan a bit of relief from the pain.
    Sorry I am no help but sending positive thoughts to you.
    Carol
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Im so sorry Jordan is suffering so badly. Are you able to get him to see his rheumy or even your GP before you go on holiday? I cant suggest anything else just give you my support. Take care & a big hug to you both. Love Maria
  • jordansmum
    jordansmum Member Posts: 316
    edited 30. Nov -1, 00:00
    hi carol ,they have given jordan pred before but only for 2 weeks it was before his steriod jabs think i will phone tommorow to see what they can do for him. Keep well ...........jenny
  • barbara12
    barbara12 Member Posts: 21,235
    edited 30. Nov -1, 00:00
    Hi Jenny
    I am so sorry that Jordan and you are suffering so much, I know you said you dont want to keep on at your rheumy, but that is what they are there for. You explain about the holiday, to see if there is anything else they can give him, maybe short term,
    I wish I could give them for real but here are some hugs for you ((((((())))).
    Please let us know how you get on.
    Love
    Barbara xx
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Jenny,

    This bone thing is evil and its so unfair Jordan has it! I can't really help but wanted to just drop you in some ((( )))'s and some hopes that they will be able to help m soon. Surely they can give him something for the pain if nothing else! Ring them tomorrow and fingers crossed they can help. Oh MTX can take up to 12 weeks to work I think? You take care of your self as well and I so hope it all gets sorted for you both. Cris x
  • helpline_team
    helpline_team Posts: 2,547
    edited 30. Nov -1, 00:00
    jordansmum wrote:
    i know it's sataday and you won't be able to reply till monday ,but i just don't know what to do .Jordan has been on mxt for 6 weeks without any signs of improvement as yet i know it is still early day's but he is struggling so much with pain and his walking has got so limited before having to stop rest and try to continue so we are limited as to where we can go out. I don't want to keep on hastling the rhummy nurse as last time i spoke to her she told me i had to give it time, but i am finding this so hard i cannot stand seeing him in so much discomfort. We are going on holiday soon and this really concerns me as it is greece so not easy to get help if needed .What can and should i do thanks in advance for any reply.

    Dear Jordansmum

    I am so sorry that Jordan is struggling at the moment and how difficult it is for you as his mum to see this. It is true that methotrexate does take time to take effect and I am aware of how you feel about getting in touch with the rheumatologist nurse but if you contact them you can talk about how to manage the pain while the medication takes effect and to talk about managing this while you are on holiday. We are here to talk to on the helpline if you feel you would like more support and to talk things through with us. I hope that this is helpful to you.

    Best Wishes
    Dawn

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