Appointment today

andylambs
andylambs Member Posts: 71
edited 23. Sep 2010, 17:33 in My child has arthritis
Philippa has her much awaited appointment with the local rheumatologist today. Fingers crossed. I really want a referral onto tertiary care but as we think she's in remission who knows what they'll do.

She has complained of pain in her jaw recently so I'm desperately hoping she is still in remission.

Anxiously,
Andy

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Morning andylambs, I hope all goes well today and that the theumatologist is both informative and helpful. Thinking of you - let us know how it goes please, if you are able. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi andy,

    good luck for today.

    Hope it goes well and you get the answers you want, my fingers are tightly crossed for her to still be in remission.

    take care

    clare x
  • jordansmum
    jordansmum Member Posts: 316
    edited 30. Nov -1, 00:00
    hi andy we have all things crossed for you here that we can good luck hope all goes well
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Hi Andy & Philippa

    Best wishes for today - hope all goes well.

    Kath & Betty
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi Andy,
    We are thinking of you and Philippa to - such anxious times. Do hope you get the news you want.

    Lucy
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I hope it went well today. Thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Thanks everyone. It's good news. She is still in remission. One finger has lost some more movement but it was the worst affected anyway. Absolutely no active arthritis anywhere. Hurray! Thank you Enbrel!

    We're all really pleased, as I'm sure you can imagine. She's doing absolutely everything a "normal" 6 year would be doing.

    The rheumy is referring her to an opthalmologist and a maxillofacial surgeon for her eyes and jaw, but as far as he can tell there's nothing to be concerned about. He'll be keeping her on Enbrel for 2 to 3 years as it obviously works for her, so all my concerns about the NHS and funding of Enbrel were plainly wrong. I eat my words with pleasure.

    Next appointment in December, with blood draws in November.

    Yippee!

    I do so hope you have such good news with your children, and you for yourself DD.
    Andy
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Awww that's brilliant news well done Andy and Phillipa and yay on the remission fantastic.

    Did they mention how often she needs to have bloods taken as Kayleigh has them done every 4 weeks :( for MTX but they've told me it's more so important to keep up to date with it for Enbrel. Kayleigh is anemic as well so needs a close eye on it so that might be the case for her.

    I'm so pleased and happy for you and you feel so at ease about things and how they've treated you is fantastic your a credit to your daughter making sure that everything is in place and getting it all sorted so brilliantly well done

    Michelle xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    This is good news. Excellent! I am very pleased for you all. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Blood draws every 3 months on the Enbrel. We're stretching it for this next one, it's due mid October but we're going into November as she's looking so good.

    When P was on MTX it was every 4 weeks for us too. The MTX can have such a nasty effect on the liver and kidneys they keep a really close watch on the blood work, but it would appear Enbrel doesn't have the same nasty side effects (though it has others, I'm sure).

    P used to be anaemic too, but since we got the arthritis under control the aneamia has been fine too. She still gets over 100% RDA of iron in the form of a vitamin pill and food but at least I'm not pumping her full of iron with no obvious effect at the moment.
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    andy, you and philippa have just made my day :D

    i am inspired by your fantastic news and so happy it all was positive for you.

    you have given me hope with my son thomas as we are just starting this cr*p journey of uncertainity.

    may your happiness and good news continue.

    kindest regards
    clare x
  • Rainbow77
    Rainbow77 Member Posts: 352
    edited 30. Nov -1, 00:00
    Hi Andy

    I am really glad that you had a very constructive appointment with the consultant and that they have agreed to carry on with phillipas treatment.


    Fayann xx
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Great news Andy - what a relief today must have been. It's a message to keep perservering with medication. I am so pleased and it's great to get good news. Well done Philippa!!! And Andy of course.