really need some advice

jordansmum Member Posts: 257
edited 8. Jan 2011, 03:25 in Living with Arthritis archive
hi guy's hope you have all had a good christmas.I have abit of a problem with jordan he is refusing to take his meth because of the side effects and i am not sure what to do. It physicaly makes him sick and because his joint pain is no better he feels that there is no point in contiuing with something that makes him feel so bad. Because of the snow we were unable to take him to his rhummy appointment christmas week and i have just recieved a letter telling me his next appointment won't be until march :shock: even though the rhummy nurse said 20th jan, i just do not know what to do , i don't want to force him but i also know the risks if he does not take them especially with his diagnoses of AS. We as a family have been through so much lately i need someone to help me . thanks guy's x jenny


  • frogmorton
    frogmorton Member Posts: 29,209
    edited 30. Nov -1, 00:00
    Hi jenny

    I am going through something similar with my youngest who does not wish to take her epilim so i get it.

    I have been able to prrsuade her to wait till we see the peadiatrician. In your case I feel you need an urgent appt with the rheumy. Nothing else will do. he is 14? am i right? Thing is he knows his own mind and if the sickness is so very bad? He takes the injections or the oral?

    Only saying as the jabs MIGHT make SOME people less sick. and has he some antisickness meds to take? Bless him my heart goes out to him and to you too x:(

    The rheumy has to become involved - this is too much for any mum to bear.


    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh boy, I sure do empathise with Jordan. I have been on injected meth for years, with absolutely no reduction in disease activity or joint pain: on the other hand I don't have any side effects to contend with but overall that is fairly meaningless. This should not become a battle ground for you and him - you are his mum, you are meant to be his comfort and solace, not a nasty lady making him take nasty meds. I think you need to get in touch with his rheumatologist, or his team, asap. They need to see him to talk things thro and perhaps find an alternative to the meth. You are not the bad guy in this - it's the disease which you both have to fight. If I was in this situation I would do the following: I wouldn't fight with my child, I would let him off a dose or two in order for me to have the time to contact his team and get an urgent appointment. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Jordansmum
    If it were me I would certainly ring the rheumy clinic for an emergency appointment, that is what they are there for, things like this cant wait, its not fair on you or Jordan.
    I do hope you can get an appointment very soon.Please let us know how you get on.
    Lots of hugs for you both ((((((()))))
    Barbara xx
  • jordansmum
    jordansmum Member Posts: 257
    edited 30. Nov -1, 00:00
    thanks guy's as normal,
    i am going to phone the rhuemy nurse tomorrow to get an appointment as i can't face this one on my own ,the doctor at bristol did mention putting him on injections but there seems to be no connection between the two hospitals about jordan's continued care he also mentioned anti sickness but once again i am in the dark i feel at the moment that i am struggling with this whole thing on my own and do not know which way to turn i have heard no more from bristol and have had no follow up at poole. I have tried to read up on AS but it doesn't make for good reading and makes me feel even more sad . I will let you know how i get on tomorrow and thanks once again for your replies.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Don't read up - it won't help. I think it fair to say that one cannot expect joined-up thinking - one doesn't get it as an adult, and I am sure that confusion reigns too when a child is involved. We have to be ever-vigilant when it comes to treatments, appointments, follows-up etc etc, and you have to be too for Jordan. Ring 'em, hon, get an appointment and take it one step at a time. We're here too, don't forget - you also need some support. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -1, 00:00
    sorry to hear his meth is not working too well.........all i can say is force yourselves upon the rheumies and make room.........they will walk allover you unless you impose yourself upon them

    good luck
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hello Jordan's mum.

    I do know where he is coming from. But it can take upto 12 weeks for thr MTX to work. I suffered sickness for many years and dreaded MTX day and the days of feeling sick afterwards. In early September I was prescribed anti-sickness pills called metoclopramide and have not had any sickness since. They don't work for everybody as others have told me but for me they are great. I had to ask my rheumatologist for them as nobody suggested it to me and they might think it is too early for your son and he must give the MTX a go. The mtx injections did not make any difference to the sickness for me.
    I also have a problem getting my 7 year old daughter to take her medicines for chronic constipation despite everybody telling her how much it will help. She has decided she doesn't like it and that is that!
    Good luck
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • green
    green Member Posts: 7
    edited 30. Nov -1, 00:00
    Hi Jordan's Mum

    Young adults do find it difficult to manage themselves, especially things that may mean that they are a little bit different from the rest of their mates.

    My son is asthmatic and I have to pratically stand over him to take his inhalers - on a number of occasions he has announced that he no longer has the condition - although he is as white as a sheet, bad tummy pains, headaches and poor appetite. I also remember boyfriends when I was younger and them arguing with their mums about their treatments (diabetes and hard of hearing).

    The world are children/young adults live in today has changed a lot from when I was young. Boys are increasingly self-aware, not only about their medical conditions but also about the turmoil of being a teenager (the pressure of the media is unbelievable).

    I've used famous celebrities as examples for my son: David Beckham has been seen at matches using an inhaler, Halle Berry is insulin dependent diabetic, etc. They take their medication and their medical conditions are part of what makes them who they are. I am sure that there are peole in the pop world, sporting world and acting that every young person likes but does not realise that acutally a lot of these people are just like any one of us and as such have lived with disabilities.

    I hope that your son is OK with his treatment and most practitioners will be helpful when dealing with children especially teenagers (I've found this with my son - sometimes I've phoned before an appointment to mention a couple of points that I'm concerned about - just so it doesn't look like mum's nagging again, oh and of course 'embarassing' them.

    Good Luck

    Luv Green. :P
  • jordansmum
    jordansmum Member Posts: 257
    edited 30. Nov -1, 00:00
    hi guy's hope you and yours are well today , just thought i would update you on jordan , i spoke with the rhuemy nurse yesterday and she was really supportive he is now going to change from tablets to injections but she does feel that because his disease is still active that he may have to change to tnf's but this will be discussed on monday at his appointment. I feel so relieved now that i have spoken to her and you guy's because without your support i do not know what i would do, so once again thankyou xx jenny
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hey, that is good news and I hope it proves to be a winner with Jordan. He will have less injected - I have learned on here that the jabs involve smaller doses as the liquid is a little more powerful than the tablets: I was on 17.5 tablet but only 15 injected. The result is the same tho - not much difference to the arthritis - :) . The injections should also reduce the side effects: I hope it is better all-round for Jordan and let us know how he gets on, please. I wish him, and you, well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Jenny,

    I am sorry I don't know how I missed this.

    First a ((( ))) cus you must be on the end of your tether. I do understand totally where Jordan is coming form but equally the mtx might be doing something.... and just ow its all he has?

    I so agree you can't wait till march and your also right hospitals just don't talk to each other... hell consultants in the same hospital don't even do that!

    Could you get them to actually do a letter from Bristol? Its so hard cus everything is always such a fight.....

    Jordan has a point but at the same time... Jenny can you do some trade off with him? He also could do with some/better anti-emetics and the gp must be able to help with that one.

    Keep Fighting for the earlier appointment and know that you are not alone. Another ((( ))) and hang in there. Cris x
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi jordansmum
    I am also late popping in on here
    I am glad though that the nurse has recommended a ifferent method on how jordan gets his mtx.
    I send you hugs (((((()))))) cause i can only imagine what you feel.
    I send jordan hugs too (((((())))) cause i can also see why he wanted to stop it. Not nice when you feel as there is no benefit and the med is making you feel sick.
    I hope he gets sorted soon
    take care
    Love juliepf x