humira not working well

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  • wynnie
    wynnie Member Posts: 117
    edited 30. Nov -1, 00:00
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    i had to read your post twice there so i could understand what you were saying ,why did they add the other drugs if the metho seemed to be working ???,were you on the highest dose of metho ??,i dont think id take anything that wasnt making much difference to me ,can they not keep you on just metho and maybe some additional painkillers ,ive never been on humaria if thats how you spell it !!!,so cant give you an opinion on it ,and i do know many of you are on multiple drugs but if you feel that humaria isnt working id come off it ,you are the only person who knows your own body so go with your gut instinct and good luck x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Sometimes woman cannot live by meth alone. :wink: In my case the meth and sulph were not controlling the PsA so the anti-TNFs were introduced to give yet another layer of support. Is it working? Yes, I've had fanatastic bloods for the 3.5 years I've been on this regime, with my ESR and CRP being continually under five, even occasionally being too small to measure. Has the pain lessened? No, because the joint damage is too advanced but I can take some cold comfort in the fact that further joint damage in my hands etc is being slowed.

    I've had just one experience of a meds success, that was after my first inflliximab infusion, and very pleasant it was too. It lasted about a month (June 2004 I think) and, as far as I am concerned, I hope it never happens again. The disappointment of 'normal service being resumed' is too crushing for words. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    Thanks so much for your continued support.
    Buka I'm starting to realise that Humira is'nt the quick fix I thought it was going to be. Thanks for your input, as you say, I'll hang in there. :)
    Wynnie, the methotrexate was'nt doing enough to control the disease, that's why I'm on the Humira.
    DD at least if it prevents further damage it's worth taking. I have noticed some improvement, not at any specific time after the injection but just overall, just not enough.
    I'll keep on with it and the Dr did say he hoped it would still give more of a response. The lady beside me actually gave me good support by saying she was on it nearly 6 months before she found a really good benifit from it. Trouble is PsA does'nt have the same options as RA so I'm really hoping this works.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    In all my arthritic years I've only found one 'quick fix', namely oral steroids. I took my first dose of 20mg one dark February afternoon at 2pm thinking 'Here goes nothing.' only to find myself by 6pm feeling so much better and brighter. I fell in love there and then but have now managed to come off them because they are deceitful little beggars. :wink: Don't get me wrong, oral steroids have a part to play and can be a very useful support tool for when things are rough (I was off everything at that time thanks to enbrel going wrong on me) but they are not an answer in themselves.

    Everyone is different in what meds work for them and their version of auto-immune arthritis: some can get along very well with just meth, others with meth and lef, others with meth and sulph and so the various combinations roundabout twirls on. For some of us, however, the big guns are necessary; what the rheumatologists should not do is make promises that they cannot guarantee. There's a line from a John Cleese film that goes along the lines of 'I can handle despair but I cannot handle the hope.' That is me and my meds in a nutshell: expect nothing and you may be pleasantly surprised but expect the world? I've found that only disappointment ensues. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    Thanks DD there's a lot of truth in what you're saying. I've had my fair share of steroids, both oral and injected and they can sometimes help but as you say, they are'nt without their drawbacks. For me with Ps A a huge flare up of the Ps. :roll: and deep deep blackness in mood.
    I'm keeping going with everything and we'll see how it all goes.
    Many thanks to all of you who took the time to reply and offer support.
    big hugs.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    The blackness I understand but, as my skin is behaving quite well, I realise that I am blessed in that department (currently it's only on my ankles). I recognise that the sulph has helped with that, but (despite my being far from evangelisitc about 'natural' remedies) skin-wise things have improved since my Mum gave me a Christmas present she didn't want, namely a manuka honey foot and heel cream. If you would like the details please PM me - obviously I cannot guarantee that it will work for you but it has helped my skin. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    Grand job DD, I've sent you a pm. I'll try anything. My heels and achilies tendons are burning and painful yesterday and today. Just a little something more to take my mind off my other pains. :roll:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I have Achilles tendonitis in my left heel and it's horrid. My right ankle crunches delightfully but at least my skin's looking better! :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    We get to the stage where we're glad of any little thing going well DD don't we. Thanks for the pm and info about the Manuka Honey.
  • lorica
    lorica Member Posts: 187
    edited 30. Nov -1, 00:00
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    I've not posted for a long time.... I started on humira almost a year ago, and wow, it was fantastic I was able to give up my walking stick and pain meds, my bloods have been excellent no signs of inflamation, even got to the point of thinking I might be able to go back to work..... but alas all good things come to an end... the pain is back, in more joints than before, I'm using my walking stick more, still not to the same extent as before tho.... my chances of returning to work are now out of the window... I too didn't want the doc to take me off it, and the thought of it no longer working upset me so much... I'm just hoping that this winter will end... hoping the cold might be the reason I'm so bad...

    As a side note did you know its easier to get on humira in Scotland than the rest of the UK...!!!
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    Hope you're feeling a bit easier now lorica. What has the consultant said about the humira not working as well for you.