Unsuccessful on Humira. What next?

Becky88
Becky88 Member Posts: 96
edited 22. Nov 2016, 12:19 in Living with Arthritis archive
I have RA and was just wondering if anybody else has had the experience of being on Humira and still having painful, swollen joints? What might my next options be? I am concerned as I thought that the Anti-TNF medications were the last option....but are they all different and do they have different strengths? Any advice would be much appreciated. Many thanks.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    What are your blood tests showing? I have been on humira and injected meth for a number of years now and I know it's working because my bloods have very low figures for CRP and ESR (sometimes they cannot be measured because there's nothing there). I know it's working because my mobility improves a little for two or three days but not once has my joint pain decreased due to the damage caused before I began the meds.

    We live in a world where we are used to medicines removing all symptoms and, in some conditions, disease itself. Arthritis is not so obliging, some are lucky and have the majority of their symptoms eased to a very great extent, which must be nice but the rest of us have to muddle through as best we can. How long have you been taking humira? Is it supported by any other medication? What else have you tried? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Becky88
    Becky88 Member Posts: 96
    edited 30. Nov -1, 00:00
    PS I have also been on Sulfasalazine, Meth and Leflunomide. My blood tests always seem ok but this doesn't always match how I feel.
  • Becky88
    Becky88 Member Posts: 96
    edited 30. Nov -1, 00:00
    Sorry, the first part of my reply disappeared..... I have been generally better since being on Humira but I still have problems with my wrist, foot and knuckle. When I went for some steroid injections last week, one of the doctors told me that I should be thinking about going onto the next step, medication-wise as the scans showed that I still have very active arthritis.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Thank you for the added info., I appreciate it. I have never been on just one med for my PsA, it's always been two or three at the same time: I was one of the early 'pioneers' who had to 'fail' on at least three DMARDs (given individually or in a combination) before the anti-TNFs / biologics would be funded by my hospital. Over the years I have taken cyclosporine, leflunomide, tablet meth, sulphasalazine and then infliximab, Enbrel and now humira. I am not sure what the doc meant by 'the next step' unless it means combining the humira with a DMARD such as meth which is par for the course.

    I've had lovely bloods but felt rotten and rotten bloods but felt OK (especially when Enbrel was doing its thing in not tackling the arthritis preferring to aggravate my liver). There is no rhyme nor reason to our troubles which makes them so much harder to deal with. It would appear that humira alone is not cutting your particular mustard but maybe adding another med will make the difference - I hope so. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Becky88
    Becky88 Member Posts: 96
    edited 30. Nov -1, 00:00
    Many thanks for your reply DD. I too had to go through the usual dmards before qualifying for Humira....which is why, I think, my wrist has got so bad. Methotrexate made me feel very sick so I am not sure if they will want to try it again (with the Humira) so I wonder if they will offer Enbrel or infliximab. May I ask how you found the infliximab infusions. Am I right in thinking that it isn't 'stronger' than Humira, just different? Many thanks.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Tablet meth didn't make me nauseous but it did give me a lovely rash which is why I am now on the injected version; one week it's the meth injection then the following it's the humira followed by the meth two days later, my kitchen calendar does not make for interesting reading.

    The infusions were fine, a convivial and social occasion but that was balanced by the faff of finding parking and the hanging around after to make sure all was well: give me every time the convenience of DIY at home. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
    Hello Becky,

    For several years I was on a combination of fortnightly
    stabs of humira and daily dosage of azathiroprine until
    September last.
    In that month my ra consultant told me I could stop the
    aza, which had been on a gradually reducing basis. Since
    then I have just used the humira. A bonus for me is that
    h also blasts another of my blips, crohns disease, so I am
    presently in a happy bogof situation.
    Looking back it was many years before h was prescribed for
    me and it has taken quite a while for my bloods to show the
    relatively low readings they now do. I am happy that my
    ra problems adn pain levels now are greatly reduced.
  • Becky88
    Becky88 Member Posts: 96
    edited 30. Nov -1, 00:00
    Many thanks for all of the advice from the people who were kind enough to reply to me. I really appreciate it and the leaflet recommended by the Webmanager was very useful.