humira not working well

ritwren
ritwren Member Posts: 928
edited 13. Apr 2013, 17:41 in Living with Arthritis archive
I don't know where to start. I've had PsA for about 5 years or so, (seems like a lot longer but it took a while to get a diagnosis)
I started back on Methotrexate in nov. I had been on leflunamide and had one flare after another all last year. The Mtx cleared up the Psoriasis and helped with the inflammation and swelling and to some extent the pain.
I started Humira in Dec and have been having it every 2 weeks. I do my own injection of it and the Mtx.
I will be going for the 3 month assessment to see if I should stay on the Humira, in a few weeks.
I don't know what to say. I've had more pain than ever in most of my joints especially in my hands. There is'nt much swelling however but I still suffer a lot with peripheral neuropathy in my feet caused by the swelling I had which damaged the nerves.
I'm worried that if I tell the truth about how much pain I'm in, they'll say the Humira is not working and take me off it.
If I don't say about the amount of pain, then they'll keep me on it even 'tho it's not working that well and I might miss the chance to change onto something that might work.
Help.
«1

Comments

  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I’ve not had humira yet but I can empathise. Starting new meds is always a bit scary and one is inclined to feel ‘better the devil you know than the devil you don’t know’.

    However, if you read your own post you’ll see that you don’t feel the humira is working well though it might be that your bloods are OK and it’s just the pain that needs dealing with. (I’ve no idea whether or not humira would be expected to help the peripheral neuropathy in your feet or not)

    In your situation I think I’d tell the consultant exactly what you’ve told us and then let him work out the best plan after seeing your test results. He might ask you to give the humira a bit longer, or raise the meth dose. It doesn’t necessarily mean a different med.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I've been on humira for some time now - it gives me wonderful bloods so I know it's controlling the PsA and I do experience slightly better mobility for five to six days after the injection but that's it. Reduced pain? No. More energy? No. Is it working though? Yes it is, not as I want but it's controlling the arthritis and hopefully slowing further joint damage.

    You haven't been on it for that long, it may not yet be fully kicking in so I would urge you to give it longer and, as Sticky said, maybe it's time to review your pain medication. What do you take for that? I have 30/500 cocodamol, I also take a daily diclofenace to help with my Achilles tendonitis and I soon know if I've missed one! Don't give up just yet, ritwren, these are early days. DD
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Stickywicket and Dreamdaisy thank you so much for your replies. I do feel that I've somehow lost my way these past few months. My Daughter has been absolutely fantastic this past year especially and I don't know how I would ever have coped without her both physically and psychologically, also I have a good friend and she has been great too.
    Sometimes it takes someone else to help me put things into perspective. You are both right of course, I cut right back on my painkillers when I started the Humira. I take one 100mgTramadol a day and 100 mg Celebrex but I'm so sore. I will increase back up to 200mg of both, I had been on 400 of the Tramadol but as I say I cut it out.
    I'm on 25mg of the Methotrexate and don't think they'd increase it. As you say DD it's early enough days for the Humira and in truth I can deal with the stiffness, knowing my bloods are ok and the swelling is mostly gone if I was'nt so incredibly sore all the time.
    Biggest of hugs to you both, Rita
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Hiya,

    I would just let the specialist you see know exactly how you are feeling. I was on Humira before but it wasn't for me, my doc put me on another drug after Humira.

    The Doc will look at your bloods and ask how you feel to see if the drug is working or not. If I remember rightly though it does take a while for Humira to start working? In my own experience though when I haven't felt well or have been in pain, usually my bloods will reflect how I am feeling letting the doc know something is not right.

    (I thought it hurt having those pen injections!!!)

    I do hope you feel better soon,

    best wishes,
    Charleeh
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Thanks for your reply Charleeh. My bloods don't always reflect how the Ps A is doing, my feet were up like balloons and I could hardly walk several times last year and my bloods were ok. That's common with Ps A 'tho.
    I've increased my analgesic this afternoon and it has helped with the pain. We'll see how it goes.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I clearly remember (when I was granted humira) my rheumatologist telling me I would be able to stop all my other meds and lose my crutches. That worked out OK then. :wink: No-one has a crystal ball, all we can do is try our best, take what we need when we need, and give the meds time to work. Dealing with an auto-immune arthritis is far from straightforward. DD
  • Milly8
    Milly8 Member Posts: 114
    edited 30. Nov -1, 00:00
    Hi Rita glad to see you have upped your pain meds.i have been on humira since August last and in the beginning I did not think I was working that well but the longer i have been taking it the better I have felt.i reduced my pain meds like you but after a chat with rheumy nurse I started upping them again.i know it scary and you don't want to say the wrong thing when you see rheumy but the truth about the way you feel is is not wrong.I did worry when I started them as you have to jump through to hoops to start humira and jump through hoops to stay on it.i have spent the last 6 years running after my pain instead of getting a head start.did not want to be rely on them but mine or your arthritics is not going away and we have to take the painkillers.I hope you get more relief from the humira as time go's on.
    Bye for now
    Milly
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    DD and Milly, thanks a lot for your replies. I hope you're both having a good day and Arthur is behaving.
    I've been feeling a bit lost for sure. I know you're both right and that Humira is'nt the be all and end all but as you say Milly, you have to jump through hoops to get it and I somehow thought it would work quickly and noticably for me. I have around 4 weeks before I see the Consultant again and hopefully by that time the extra pain killers will kick in and I'll be dancing down the corridor. :lol:
    Big hugs and thanks.
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    I'm just waiting to see if methotrexate combined with my sulphasalazine will work but do not have much faith in it!
    My rheumy states he can get me back to health and functioning as I used to be! 10 years ago!! How can he say this? Maybe he knows something I don't know or he can perform a miracle! He's now swanned off to Australia for a year! He even sent a nasty email to my Orthopaedic consultant before he left! Just wait till he gets back! If it was up to him I would not have got my ill health retirement! How can he say I will be back to normal? What is normal? Has anyone else's rheumy told them this?
    Hope your meds start to help you or will your rheumy change them?
    Maria
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hi
    Sorry I cant offer any help, but I do hope you get something that will work very soon...or something combined with the one you are on...it must be so rotten when you build up to taking meds then they are a let down...
    ((((((())))) xx
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    ritwren wrote:
    hopefully by that time the extra pain killers will kick in and I'll be dancing down the corridor. :lol:

    If you are could you let us all know what you're on, please ritwren? :lol:
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Maria, Barbara and Stickywicket thanks for your replies and Stickywicket for making me laugh.
    Maria, I hope the combination works for you.
    I've got my 3 month appointment for the Humira review for next week. Bang on the 3 month date too, funny how when I attend the usual Rheumatology clinic the 3 month review can stretch into nearly a year.
    Still it'll be good to get the review. I think perhaps he'll keep me on the Humira and I'll just have to try to take extra painkillers as I have been doing. We'll see. I can't say I'm looking forward to the appointment.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Just tell it like it is, listen to what he thinks and try to work out a plan of action together. I don't think the RA meds will cut out all pain for anyone and, for my money, it's much better to be on pain relief (which I can control the dose of) than expect the RA meds to do the lot.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    As far as I am concerened the humira and meth is there to slow further joint degeneration by reducing the level of disease activity but will they affect the damage that's already there? Dream on Daisy! For a lucky few these meds are the complete answer, for the rest of us they're not so it may be necessary, sometimes, to up the pain meds to help us cope with the various ups and downs of our arthritic lives. DD
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Stickywicket and Dreamdaisy thanks so much for your continued advice and support. I will do as you say and let him know I'm still sore. I realise now that the pain needs to be controlled by different meds than the Humira and Methotrexate. If the drugs are working under the skin as it were, then I'm happy and fingers crossed it will keep Arthur in check.
    Big hugs to you both.
    Rita.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    None of the DMARDs etc that I have had have ever done anything towards easing the pain, the same goes for the anti-inflammatories. It's not easy. :roll: Speak about it to your GP and/or rheumatologist and I hope that a small but steady intake of pain dullers will help to make life a little more comfortable. DD
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Thanks DD. I need to be taking them regularly I know. I think my expectations were too high with Humira. I have felt easier since increasing my Tramadol SR
    Big hugs. Rita.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    For me it's been a matter of accepting that the humira and meth are working but not in the way I would like. I think that's true for quite a few of us on here - for those who have been granted the 'miracle' well, they don't need to post anymore. That's a luxury I know I will never have! :) If the slow-release helps you to cope better then that's OK. DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I'm glad things are a bit easier, ritwren. I'm a great believer in taking as few meds as possible but we still have to take what's necessary for a reasonable life. Nothing is simple :roll:
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Thanks DD and SW, things are a bit easier but of course nothing is without side effects. I just keep telling myself that even if I can't see a great difference, things are working underneath.
    Big hugs to both of you.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    If the humira keeps the disease itself under control that's a big plus long term. You still need to deal with much of the pain but ho hum, that's - arthritic - life :roll:
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Yes I now realise that, I think perhaps I was expecting a lot of the pain to go away.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh my, that does sound familiar; it took me a while to learn that, although she was doing all she could with the meds, my rheumatologist was unable to guarantee what she was saying. I've yet to meet a rheumatologist who has an auto-immune arthritis but, on the plus side, I do know one rheumatology nurse who has RA (and who also sulks mightily before doing her meth injection). DD
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Thanks to you all for your realistic support regarding how things are with me at the moment.
    I went to my 3 month appointment and they want me to stay on the Humira for another 3 months in the hope that I will get a better response. I was told that there is still time for me to get more of a benifit from it. I'm going to stay on it for the next 3 months to give it a good try anyhow. Meantime they want to stop the pregabalin and start me on Gabapentin to see if it helps with the peripheral neuropathy in my feet and of course the Fibromyalgia is playing up big time at the moment.
    I was so glad to have my Daughter with me as the experience was not a good one with not a single member of staff telling me their name nor showing any real interest in how I am as an idividual.
  • Buka
    Buka Member Posts: 43
    edited 30. Nov -1, 00:00
    Hi Ritwren

    I've found Humira to be a strange one. I started on it in late 2008 and for the first six months I didn't really notice much although I was told my bloods were okay. Then in april 2009 after a massive flare I started to feel better. By 2010 I felt like a different person who had got their life back. I got back on my bike for the first time in 8 years and I really enjoyed my Arthur holiday. I felt so good that I had reconstructive surgery on both feet in March 2011. I had to stop the humira for four weeks and when I went back on it it just didn't work in the same way. I am told this does happen sometimes. I then had an awful year which ended up with me coming off it completely to try Rituximab. That failed so last september back to the Humira for another go. It took until January before I started to feel the benefit and like Dream Daisy I notice improvement for about 6 days after the injection. But I feel I am on the right path again. It can be soul destroying trying to get these meds sorted and after 13 years I have tried a fair few of them but I just wanted to say hang on in there because there is always hope that things can improve.

    Bukax

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