Enbrel vs Humira and steroid help!!

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Terminallypretty
Terminallypretty Member Posts: 6
edited 22. Apr 2019, 08:10 in Living with arthritis
Hi, im looking for anyone who can offer advice or experience on the above. I am on Enbrel injections and 7mg Prednisolone. Ive been on Prednisolone 3 and a half years and every time I try to come off these I get extremely sore and tired even though my inflammation levels are not rising due to the Enbrel...but I need to get off the steroids as we all know they are not a long term solution! Its difficult as I work and have two children who I want to be fit for. So the way forward is meant to be switching Enbrel for Humira in the hope Humira is more effective to help me get off Prednisolone but Im very nervous about changing injection. Does anyone have any success with Humira? Also, anyone on steroids long term who can tell me what thats doing for them? At wits end!!!!!! :oops:

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Terminallypretty,

    Life in the fast lane I see! Good name but my iPad is throwing wobblies silly thing.

    So things are more or less controlled on the mix of Prednisolone and Enbrel, you know that can’t last - steroids are really bad for the rest of your body - so now it’s time to try Humira.

    I’m afraid I can’t help there, only to say when I was on steroids I came off in very small increments, like 1/2 tab every other day and only when I was feeling properly ok did I do another half so I’d reduced 1/2 tablet a day and so on.

    If you want to chat to a member of our helplines team their number is 0800 520 0520

    Take care
    Yvonne x
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I've not taken either enbrel or humira. I get by well on methotrexate and hydroxychloroquine so please bear that in mind when deciding how valuable, or not, what I'm saying might be.

    I think a new med is always a bit scary until we realise how well we are tolerating it. I've always understood enbrel and humira to be, essentially, in the same category and that it was just a matter of 'horses for courses' as to whether they each helped any individual.

    I think we've all done the steroid dependency / withdrawal thing and know how difficult it is. Do you know why? It's because the adrenal glands take a break when we're on steroids as the steroids do their work for them. When they have to start to work again (when we get to a lowish dose of steroids) they get stroppy and refuse the hard graft. That's why, as Yvonne suggested, we have to creep up on them so's they don't know what we're up to, by decreasing very, very slowly. It would also help if you could pick a good time to start when life isn't quite so hectic for you. I do know that life, with kids, is always hectic but, when mine were young, I devised alternative ways of playing with them and being with them. Think laterally. What they really want is your presence and your love. Mutual bungee jumping isn't necessary :wink:

    Personally, I'd be trying to get off the steroids while sticking with my current meds given that they're working but it really is a personal choice. Best of luck with whatever you decide.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Terminallypretty
    Terminallypretty Member Posts: 6
    edited 30. Nov -1, 00:00
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    Thanks for sharing your thoughts. I reduce the steroids half a milligram per two weeks but everytime I get to 5mg Im back to the high level of pain (closed jaw etc). You are right my presence is most important to them, thanks for that :D I am meeting with specialist this coming week but find it helpful hearing other peoples experiences
  • wazz42
    wazz42 Member Posts: 233
    edited 30. Nov -1, 00:00
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    Hi,

    How about, as a starter go to 5.5mg and take a rest there. After a week or so try a 0.5mg less every other day. Try not to get stuck on the 2 week thing, let your body tell you it’s ok then do the next bit. Is there something your specialist can give you as well as the Enbrel to cope better generally? It sounds like your medical team are good, that’s always a bonus!

    Take care
    Wazz x
  • Terminallypretty
    Terminallypretty Member Posts: 6
    edited 30. Nov -1, 00:00
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    Ive been on most medications unfortunately so this is the only option Ive been given at this time, I think another chat with the specialist & then I will need to just get on with it, I think i’ll try that re: steroids :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Enbrel tried to explode my liver so that paved the way for my introduction to oral steroids: I became a pred head with some joy, I hadn't felt that good for over ten years. After three years of steady dosage at 5mgs per day I took a year to withdraw, I dropped between a half and one miligram every three weeks or so, sometimes a longer interval was required and I didn't beat myself up about it. Taking so long meant that my body had time to adjust to making its admittedly inferior version and also gave me time to adjust to feeling increasing pain and discomfort. I have been on humira for around ten years ( I now have imraldi, the bio-similar but I have not begun that yet) and injected meth, my PsA is well-controlled but I still flare and the meds do nothing for my OA.

    I know from reading on here that those who are given access to the anti-TNFs earlier have better outcomes, I was under the old regime where I had to fail on 3 DMARDs before they were considered so it all came far too late. None of the meds I have taken have reduced pain levels and they never will. I've organised my life to make it as good for me as it could be, having been compromised by auto- immune issues since birth it was no big deal as I've never been able to live as others. New meds hold no fear for me, I've never researchd them on the web because other people's experiences are of no relevance because they are not me, do not have my physiology, my experiences or medical history. I can honestly say that none of the meds have achieved anything near what they promised but I know full-well that without them I would be in hell as opposed to one of its distant ante-rooms.

    Take more time to drop the steroids and try the humira, you have nothing to lose and there is the promise of a big gain for your entire body. My bone density increased by 3.4% in my first steroid-free year thus highly reducing my risk of further health matters arriving. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    Hi , welcome to the forum , non of us are medically qualified so don’t do anything without professional advice , as for steroids 7.5mg is a maintenance dose & you can stay on that without to much problems , never change it without consulting with your rheumatologist first ,

    can't help a lot with the biologic's , never tried Humira , & best one I tried was rituximab
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Trepolpen is quite right, I forgot to say that my hospital supported my plan for withdrawal, it was easier than arguing with me. :wink: I had read on here back in 2008, 2009 & 2010 that many struggled to get beyond the five, four or three mgs per day because it all came back, my thinking was reintroducing the pain and general dross on a more gradual basis would help me adjust better and it did. If I am offered any kind of steroid now I reject it because I know it's a cul-de-sac. Docs love their theories but we are the ones who deal with reality. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, how are things going now? What decision (if any) did you make? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben