expect too much?

Hi All, I've not been on here for some time, just so busy!!

Well, a quick summary:

I'm 18 months post diagnosis. I'm on MTX injections, diclofenac, paracetoamol, and hydroxychloroquine. I work 3 days a week (as a physio) I have a very busy life, 2 small children, I swim and do wii fit (not as often as I would like though!).

I'm seeing my consultant on friday and although I'm managing, I have really problematic joints and I can't remember the last toime I had a painfree day, I long to not have problems associated with RA and I would like to be painfree. Is this an unrealistic expectation?!

I have been assessed for anti TNF by doing a DAS score. I never score very high cos my worst joints (feet) don't count on the DAS and also my husband reckons that I play my pain down and don't speak up enough about it. But when I read about other peoples pain and suffering on here I feel grateful for how I am, in that I am actually doing OK.

What do you think? Should I be asking for more from my consultant? I'm 36 and have many years left (hopefully!!!) and can't imagine being like this for another 40 odd years....!! thanks for any advice / support x x

4 Replies

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  • I nearly got caught out on the das score and was taken off my anti tnf but challenged it successfully. Given your work, id really push for anti tnf or anything that will give you maximum support

    Cathie

  • It's an interesting question as I'm in a similar place to you. Have been diagnosed longer, and am on 3 DMARDS (MTX, hydroxy and sulpha) as well as the support drugs. And like you I can manage, but there's always something hurting even if it doesn't stop me doing everything. But then I have completely re-ordered my life to make that possible. Also like you I never seem to quite make the DAS score for anti-TNF, as feet and spine are the worst areas. And I flip-flop between thinking I should do some artistic moaning and groaning to raise my DAS score, and then being scared about the whole idea of taking biologics as they have risks too, and worrying that they won't actually work any better for me anyway. And I'm a wuss about injections.

    But I'm also concerned that all the little bits of damage that I'm getting are building up slowly, so tho' ok now what will I be like in 10 years? And everything I've read seems to show it's better to be as aggressive as possible with this from the start. But then I've never entirely let go of the fantasy that one day I'll wake up and this disease will have gone away.......

    So what to do? I have no idea! I like scouser's idea about thinking about what you'd say if the pain belonged to someone else. I have an appointment in about 6 weeks, and at the moment I think I'll start by asking if there's a way to get me better than I am. Certainly for you, if you're only on 2 DMARDS then there's more they could do straight off. Or have you tried others? I've also starting reading up about Tocilizumbab as The new guidelines seem to suggest that It could be easier to be assessed for that.

    Anyway, no great help I'm afraid but do tell us how you get on after Friday as would love to know what you're advised! Polly

  • If they don't count the feet (which has to be the daftest, cruelest thing?) then I think you should both ham up the hands like mad at these assessments. I'm a deeply honest person so find it very hard to lie but needs must and I'm learning the hard way that being honest doesn't always pay with RA. TTx

  • hi and thanks for your honest answers, they are really supportive.

    Interestingly a good friend of mine said I should describe my pains as though I am describing a friends pains. So I did. I also said that although I am coping from day to day, and that I choose to life my life to the full, by continuing to work, exercise and have a social life, I am not sure how I can cope like this, with this pain in the longer term.

    My consultant, who has worked out that I am a put up with it kind of person, did my DAS score. Must admit that we were a bit creative with it!! But it means that I will be reassessed for anti TNF in 6 weeks, and then hopefully start on Humira.

    Feel positive about this, and hopeful that it will be effective. Injections don't bother me, I already do my own MTX injections anyway!

    IN the meantime I suggest that all us honest put up with it kind of folk, start being a bit more complaining so that we get the treatment we need and deserve. There are so many people out there faking conditions and illness, we don't need to lie about how we suffer!!

    Have a good weekend people, hopefully as painfree as possible for us all x x

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