tom's update

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    When does he do the meth lare? Is it on a Friday or have I got him muddled with someone else? Has he started folic acid yet? As for the ache, it could be muscular as people do report muscle aches with arthritis - ribs seem to be a prime target for that tho! I hope he feels better soon. 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
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    hi dd,

    he takes 20mg of meth late friday night before bed, this is his third dose, first two weeks he was grotty over the weekend, this week he is out of sorts, was ill on thursday with temp, and really bad headache, took meth friday as usual, saturday felt a bit sick on and off, sunday was tired and back pain then today has tummy ache and sick, so another day off school! he is still loosing hair but no bald patches, and just lacks energy.
    also, after the steroid injections 3 weeks ago, most joints have eased except his right knee, he had 40mg injected and its still bad now.
    he has stopped oral steroids today so will need to keep close eye on him.

    he's in bed so going to leave him to sleep, hopefully will wake feeling better.
    c xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    As an adult on injected meth, I am checked every week for a temperature or any sign of infection: any doubts and they don't stab me. Please check with your doc/rheumatologist whether this also applies to him: meth reduces the immune system, leaving one unable to fight of any infection with any degree of efficiency - this could be why he is feeling so grotty today. I hope he perks up soon. 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
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    hi everyone, not been on for a few days, with work and tom being ill, then ex-husband trouble, i have been rather busy.

    tom, had a terrible week, he had 3 days off school due to sickness, headaches and general grottiness.
    his wrist, knee and elbow are hurting and his shoulder has decided to join in. it appears the cold weather triggered it all again.
    saw the gp midweek who prescribed cyclizine which are helping. he is to have blood test on monday to check his levels with the mtx.

    think i will have to ring the hospital if he has another bad week.

    hope your all well and enjoyinh the ray os sunshine we have today :D

    clare x
  • julie1
    julie1 Member Posts: 34
    edited 30. Nov -1, 00:00
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    Hi Claire,

    Hope you and your family are well?

    How is Tom?

    Julie x
    lare73 wrote:
    hi all,

    i havent been on here for a few days as i took tom away, just him and me and had big chats about the past 2 months and his diagnosis, this went well, he is slowly coming to terms with it all.

    he is down to 10mg of steroids a day, but the pain has come back with a vengance.
    saw rh dr today, tom is going into hospital on thursday to have 9 joint steroid injections under a general anaesthetic. gutted.
    he is to have crutches as he isnt walking far and maybe wrist splint, right hand is causing him pain, after 1 week of school, so hope this doesnt last. he is starting mtx on friday this week, 20mg tablets. still on oral steroids and pirioxicam, and dihydracodeine.
    the steroid side effects are a bit better now on a lower dose, but his pain is not controlled well now.
    will this all ever end! hope your all having a better day than us :o
    clare x
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
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    hiya.

    i havent been on for a while, i have been ill with swine flu, :shock:
    it was a crappy time but back to nearly fighting fit now :smile:
    luckily, tom had the dual flu jab before christmas so seems to have escaped, although he has a cold, which in turn has given him terrible mouth ulcers, and bruising (monitoring this).
    Then we have the 'teenager mood swings' oh the joys, he does get quite down, docs said the steroids can affect mood, even though he stopped these before xmas, it can take up to 3 months for the effects to wear off. (hence the slapped cheek look he has most days).
    joint wise, he is doing well, his hands (more the right hand) is still getting painful after writing all day at school. he has started doing pe again, the teachers are good at letting him go at his own pace, but, he had a fall 2 weeks ago, knee swollen and badly grazed, this is now healing (albeit slowly). It hard, kids fall all the time but when they have JIA, i panic when he falls.
    how is everyone else, any new people whilst i have been off???

    just a quickie, JIA workshop was great, planning more events, details to follow soon xx
  • Scoobydoo
    Scoobydoo Member Posts: 8
    edited 30. Nov -1, 00:00
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    Hi

    I too have a 12 year old Son who has JIA in both ankles, knees and his right wrist. He was diagnosed when he was 7 and we have completed 2 lots of the Methotrexate Programs, 2 lots of steroid injections under GA and he has just moved over to Enbrel injection twice a week.

    We're having a bad week this week, he can hardly walk and was sent home from school yesterday in pain.

    His emotions are all over the place. He's a very placid boy that is getting more and more frustrated and angry at anything and is going through the why me and will it ever go away?

    As a parent I feel helpless.