Fairly new on here. Has anyone noticed any differences in efficacy since taking the new humira injection?

I have been taking humira for over 7 years and it drastically improved my ability to function, albeit still with difficulty. I have been on the new version for approx 5 months, I initially thought brilliant, it doesn't sting and leave a local reaction due to the preservative citric acid being replaced, however it is maybe just purely coincidental but it also ties in with a significant deterioration in my symptoms. I am back having the constant toothache in my wrists, elbows,shoulders, hips, knees and ankles. I am becoming more breathless with chest tightening and the pain makes me feel physically sick. I have even wondered if I had been given a placebo as the decline to pre humira has been quite rapid but I've been told not to be ridiculous lol, it's not legal to do this. I also have secondary sojgrens, fybromyalgia and recurrent sinusitis. Happy Days! Has anyone else experienced any difference in their ra management? Or does anyone know if there are any other alterations to the new formula that may be affecting its performance? I've been told oh it's probably because it's been such a damp/cold winter and yes that does impact me but not usually flaring and feverish to the extent I am. 😬X

13 Replies

  • Hi Leyla13, I too think my symptoms have got worse. I went on Humira last april, and initially my hands did seem to improve a little, the swelling went down so das score went down slightly, but since about september my hands have got more and more painful. I had an ultrasound on them in November, which showed tenosynovitis and synovitis in both hands. I felt relieved as I'm sure they didn't believe me when I said how much pain I was in. Unfortunately it doesn't always show in my bloods. Saw my Rheumatologist on thursday, he decided the Humira isn't working enough so im now going on Benepali, just waiting to hear from hah for delivery.

    I don't know if it's down to the change in Humira? But the only change I think they did was to take the preservative out of it. But for me Humira just didn't work.

  • Hi Reidenise,

    Thanks for responding, I don't know why I'm deteriorating so much since the change in humira solution, maybe it is a coincidence?? I hope benipali works for you, I know it does for a lot of people, unfortunately I was on the entanercept before humira (which I believe benipali is the replacement produced by another drug company) but I suffered a severe reaction to it, so I'm reluctant to change again x

  • I've only tried Enbrel (excellent) and Cimzia (6 day headache following the initial double dose - never again will I touch that stuff) so I can't add anything useful to the Humira debate except to say I think it's so important we trust instinct and our own experience. You know your own body and how you' were on Humira before it changed and if other factors have caused your deterioration Leyla, you'll have a clearer picture once this flare is over. I feel a bit apprehensive about my imminent switch from Enbrel to Benepali but I'm encouraged by the NRAS info to date. If however it coincides with a decline in my brilliantly controlled joint health I shall be very fed up. Typically I'm hoping the side effects might be less trying but that's probably completely unrealistic! Anyway, hang on in there Leyla and I hope you're getting all the understanding and support you need from your rheumatology team.

  • Thanks Witness2, I hope it works for you 😊 TBH the rheumy team are not the best! I moved regions 2years ago and my last consultant/Rheumy team were far superior and supportive than what I have now but hey that's life lol x

  • Where do you go now. I live in Essex moved 2yrs ago but find they are a bit slate dash. Take care xxxx

  • I am in Fife, Scotland now Linda. You take care too xx 😊

  • Are you taking anything else besides the Humira. I started on it last March (having previously been on Enbrel). I also take methotrexate and leflunomide, as on its own, the injections aren't enough. Hope things improve for you.

  • Hi Sarah,

    I am taking gabapentin 900mg for nerve pain/cocodomol ir paracetamol. I couldn't tolerate methotrexate in any form- orally I had 32 + mouth ulcers at one time, constant headaches and sickness. With the injections I still felt lousy. I tried again on a reduced oral dose with humira but the symptoms all started again. On the plus side I did lose 2 stone 😂 Unfortunately it went back on again. Lefludomide gave me the same symptoms and no relief. X

  • What a pain - literally. There are plenty of medications out there, its just a case of getting the combination right. Hopefully your consultant will come up an alternative. Good luck xx

  • hi I have also been on humira for about the same amount of time and been switched to the new version i cant say my pain has got worse since the switch but I have noticed an increase in the fatigue I have been suffering

  • Hi Lynz,

    It would be interesting to know if there is any other alteration to the drug. I'm constantly fatigued, have regular migraines and the sinusitis and dry eyes from sogjrens is a nightmare. I have also developed chest pain and breathing issues and it has definitely got worse in the last few months. My old Rheumatologist specialist did say humira may stop working as well in time though, so maybe it is a coincidence??

    I hope you feel better soon Lynz x

  • I've noticed it doesn't seem to be doing its job anymore. I sometimes wonder if it's actually gone in. Nice there's no pain at all but don't feel anything. Used to feel it when the needle went in at least. I will definitely be asking my rheumy nurse at my next appointment but that's not till April. Had a lot more pain and fatigue since the newer injection. Don't know if it's coincidental with the change that's it's just stopped working. Been on humira and mtx for about 9 yrs and been fine on it til now.

  • That's interesting Shelley, I've been on it over 7 years, I wonder if any others are in the same situation?? I hope you feel better soon xx

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