Would be grateful to hear from anyone who has had their Biologic not work at all from the start due to their body producing antibodies against it working. I've been on Adalimumab for 2 months with no improvement (following Leflunamide stopping working around February) and feel terrible with the daily and nightly severe chronic pain still going on for so long. Was so over the moon to be starting on a Biologic, but things have got worse and worse. Strong painkillers and anti-inflammatories from the GP hardly help. Should be having results of bloods this week, including test for Adalimumab antibodies which should be informative (& perhaps then can have more steroids in the interim). I know Adalimumab biologic can take up to 3 months to work, but the Rheumy was surprised at no improvement. Anyone else had this happen? Thanks.
Developing antibodies to a Biologic, stopping it working - NRAS
Developing antibodies to a Biologic, stopping it working
That sounds disappointing. Hope the test results lead to an effective treatment.
I take MTX alongside my biologic to try to stop this happening....
Thanks helixhelix. Very disappointing so far. Was on MTX for about 13 years, but 'poisoned' the body in the end. Hope things carry on well with you 
I can’t tolerate MXT so my rheumatologist has kept me on leflunomide instead with all my biologics as she says it will do the same thing.
Thanks bpeal1. I found Leflunamide very good too (though on its own, not with a Biologic), so it was a big shame it topped working around February this year for some reason. Take care and thanks.
Hi, please could you say more about your body being poisoned by methotrexate, I'm really interested as to what happened?It doesn't suit me but I'm still on it.
Thank you
Thanks Flipper12345yellow. I think I was on MTX for a long time and it gradually became toxic in the body. It's a nasty drug anyway isn't it, but over time I suppose it was likely it would 'flood' the body. I used to have nasty nausea for a day or two after taking it weekly, but then the last few years the nausea was pretty much constant. Used to dread taking the horrid little pills - and when I did the injections instead - it made no difference, which was no surprise to me - as it wasn't in the stomach they were adversely affecting me, but throughout the whole body which couldn't tolerate it any more. Having rests from it (when liver markers went high a few times) didn't work either. I suppose it's different for everyone and people can tolerate it for varying lengths of time. It had been very successful with my RA for years, so can't really complain, but do wish I'd been aware of other options sooner and been taken off it sooner so didn't have to 'suffer' so long with it! But it is a 'cheap' drug, so preferable to prescribe! Thanks Flipper. Wondering in what way MTX doesn't suit you?
Sounds similar to you, although I've only been on it for 18 months.I actually feel sick when it's time to inject, as if my body knows it's wrong for me.
I then lose the next 2 days sleeping and feeling really unwell.
I haven't felt this unwell ever.
I asked for dose to be reduced if they won't stop it altogether but was told no, not yet until we get a biologic that suits you. Im thinking of stopping it anyway. I didn't take it for a while as I was recovering from a virus and I felt so much better in myaelf, even my mood improved. Didn't feel so low and had energy.
Thanks for replying, all the best
Thanks again Flipper. Glad you'll be on a Biologic with the MTX. I don't know about doses when combined with biologics, but when well on MTX, the maintenance dose was 10mg/week. I said on answering another post that I believe many on left on too high a dose of MTX without trying to optimise the dose so that you're not taking more than you need (hence limiting bad effects too of it). Sorry you're feeling so rotten. Our bodies do tell us and we should listen, as you are doing. Hope things are moving with trying a biologic. I wouldn't condone going against the Docs, but as said above, sometimes our bodies tell us what to do. Definitely sounds as if you shouldn't be on MTX. I also remember feeling quite euphoric feeling better gradually after coming off MTX. Do hope it all works out for you
I found it worked really quickly for me but after 14 months it stopped working which was really disappointing. Since then I’ve been on Enbrel and then changed to the biosimilar Benepali. I had to add Methotrexate into the mix as the concern was that I would develop antibodies again and it would stop working like Humira. Apparently Methotrexate helps to stop the production of antibodies. I don’t think Benepali works as well for me as Humira did originally but it’s still better than nothing.
Clemmie
Thanks so much Barrister. Very sorry to hear about your Humira stopping working. That must be horrid after doing so well on it. It seems quite a few people take MTX with a Biologic as it works better - though I wasn't aware that the reason is the MTX helps stops antibody production, so thanks for that info. I'm not going to be starting MTX again after my previous long-term experience of it, so not sure how likely it is that this Adalimumab will ever work. If not working after 3 months, probably be offered a different Biologic to just keep trying. My fear is having to get thru weeks/ months of this excruciating chronic pain, waiting for a Biologic to work, as painkillers & anti-inflamms only take an edge off at best. Thanks for your interesting reply and Go Well.
Please don't give up hope. I tried cimzia which worked for 2 weeks, then simponi (again a couple of weeks) then rituximab (didn't work at all) then orencia (which helped a bit but only gave 60% relief but I would have taken that!). My consultant thought she could do better and tocilizumab has changed my life. Took 4 months to kick in but 4 years down the line I feel so much better.
The process of trying 4 different biologics took almost 4 years with steroids inbetween (along with azathrioprine leflumonide and hydroxychlorocin-I have a liver condition so can't take methotrexate). I don't think that I was ever tested for antibodies to the various biologics but did get very low when each one failed and I was in so much pain. There are lots of different ones to try but I do sympathise-it's a slow and painful process finding the one for you. Good wishes.
Thanks Silverpixie. Waw! Very sorry you had to try various Biologics before the Tocilizumab worked - 4 years is a hell of a long time to suffer in hope in the meantime. I feel total dread at that prospect as in chronic agony daily and nightly, gone from bad to worse. Steroids in between is good as we know in relieving some stuff, but can't have them often with their bad effects as you know, so you must have had awful chronic pain in between for so long. Really feel for you. Very glad you're in a better place now - truly hope it lasts Silverpixie. All the very best
Hello. Earlier this year l did not feel as if the Toczilimub infusions were helping me any more l had been on it 9 yrs monthly. l saw my consultant who advised me that l had been having some abnormal results in my blood tests which is why she had called me in. They stopped my infusions and my methtrexate was reduced . 3 miserable months later l have started Retuximab infusions the initial 2 which are a fortnight apart were done and l was advised it would take up to 2 months to feel the full benefit .l am now in week 3 of having had the second infusion and already my hands are rapidly improving and also my other joints so l am very pleased. I was told my body was making antibodies to the Toczilimub and it was affecting my kidneys. Leflunamide affected me the same way but that was within weeks of starting it. New and old drugs can obviously start this process so l would advise you contact your RA dept and let them know how you feel and let them help you . Take care and keep safe .Good luck
Thanks so much for that interesting account Retirednhs - and what sounds like a 'happy' ending . You did well lasting 9 years on Tocz by the sound of it. It sounds as if all the DMARDS & Biologics affect most people adversely in the end somehow - but at least there seem to be a range of them to choose from to keep trying. How wonderful to start feeling the hands & more improve. Heaven. Yes, thanks, I'm in touch with my RA team, expecting the blood results this week & am letting them know I'm desperate for proper pain relief. (Couldn't have steroids either until after this antibody test, so hope at least can have them now.) Thanks again Retirednhs, all the very best
Hi Blodynhaul,It’s coming up to 3 months for me on humira now, with basically no change , in fact my pain is getting worse. I’ve been advised to carry on a bit longer….I can’t take methotrexate either as it made me ill for 3 years before I came off it.
Thanks so much Emye343. Very sorry to hear that. Your situation sounds very similar to mine as I won't be having MTX again either. It doesn't sound as if your Rheumy has done an antibody test on you to see if you're producing them stopping the Humira working. I suppose that is what must be happening. I've gone right downhill in so many ways since about February - as all the 'trying again' etc drags things out & meanwhile go from bad to worse, Do hope they will change your Biologic fast. It still means having to wait for it to work, but like some people have recounted - they can work within a couple of weeks. Here's hoping that happens for both of us! All best wishes, hang on in there.
Hi Blodynhaul,Thanks for your reply. It was so nice to reconnect! I saw my gp this morning and asked him about the antibody test you mentioned to find out if my body is reacting against humira - he had never heard of it even though his special interest is rheumatological disorders. I was despairing a bit as I imagined I wouldn’t be seeing my rheumatologist (who flies over here very occasionally) for a long while and I can’t even get an email question to her. (The connection is through one, part time ra nurse who is also the fracture clinic nurse and has more than enough on her plate). Anyway, amazingly, I came home to a letter inviting me to an appointment with my rheumatologist who will be on a flying visit here in two weeks’ time! I’m thrilled and will certainly ask her about the antibody test and about moving off humira - do you know yet what you will be trying next? Do let me know and keep safe! X
Hi Emye343, great to hear from you again (though shame it's about bad health!). Wonderful to hear the Rheumatologist (Rheumy) will be visiting at last! Not too surprised the GP hadn't heard of the antibody test (I find some of our GPs here haven't heard of things either), but the Rheumy should know about it. Maybe it's quite a new option. Hopefully they can take a blood sample from you straightaway, same time as the regular bloods & test for the antibodies. The result of the antibodies must take a couple of weeks or so as the rheumy nurse implied that on the phone to me today. I'd pleaded for steroids (that I couldn't have until having the bloods taken for the antibodies as it would otherwise interfere with it) - and thankfully now been prescribed them today (in time for weekend) to help with all the pain/inflammation in the interim. She said by the time I finish them (3 weeks-ish) they should have the antibody result. At least if they do the antibody test for you, then they'll know if it keeping you on is a waste of time. Can't recall if you're on something else at the same time (like methotrexate MTX) as it seems like some people are on Biologics as well as MTX - and someone on here said the other day that the MTX stops you manufacturing antibodies against the biologic. Rather ignorant about that, but interesting (I'm not going back on MTX ever though). Wishing you all Good Luck & Happy Outcomes. Will be good to know how you get on with the Rheumy face-to-face appointment. Take care!
Hi Blodynhaul,Great to get your reply! No, like you, I’m NEVER going back on methotrexate again - it made me so ill . I was on it for 3 years as they refused to take me seriously: I went down to 6and a half stone before they acknowledged that, perhaps, it wasn’t the drug for me! I can’t stomach hydroxychloroquine or sulfasalasine either as the nsaids destroyed my stomach. (I ended up with quite serious haemorragic gastritis which it took the best part of 2 years to recover from). Unfortunately, enbrel has done it again and I’m booked in for a gastroscopy in November (waiting lists…) to see what actual damage has been done. Thankfully, humira doesn’t affect my stomach- but it just doesn’t do anything!
Have you tried other biologics? I hope you get the antibody tests sooner rather than later and that you can get started on something more effective very soon. Please keep me in the loop. All the best, x
Thanks so much Emye343, so sorry about your horrid stomach problems. I've been so lucky on that side of things so far. MTX truly felt like a totally poisonous drug though, as you also experienced. Pity about Enbrel. Just hope the Humira can kick in for you! It's my first Biologic after 20 years on DMARDS, so all new to me, but it's quite daunting reading a lot of people's experiences having to try different ones over periods of time and side effects etc...So trying not to dwell on that. Thanks for your best wishes - all the best to you too with the Rheumy's visit. Be great to hear how you get on! x
Sorry to hear this. I was on Humira (original product and not a biosimilar) in 2013 for 16 weeks and it did nothing at all. For many it is excellent so it’s very much what works for one doesn’t for another. I wish it had worked for you. I hope you can soon be started on another biologic.
Thank you Neonkittie17. Do hope something else has worked for you since then, Yes, it seems rather pot luck what works & what doesn't, but when feeling awful it can be so daunting wondering if they'll keep not working (though do keep positive about it). Thanks again & hope you're doing ok.
Yes thank you, I’ve had a great success with a biologic after Humira for 8 years but it’s time soon to change as it’s giving side effects. Shame as it’s the best med I’ve had. Hoping you get to hear your results soon and can find something that works for you. I really do. 🙏🏻💗
Great to hear Neonkittie 17. It's such a shame when things stop working for some reason! Wishing you all good luck with the next one! Thanks.
Thank you and hoping for you too. 🙏🏻
I have just asked the same question as you. I only started on biologics a couple of months ago but after each injection I have more swelling and pain in my joints, I’m dreading my next injection.
Horrid to hear that catcat01. Hope you're able to see/speak with the Rheumatologist Rheumy) about it all & maybe get an antibodies test to see if that's stopping it working. Hope in the meantime your swelling & pain can be controlled enough. So debilitating having chronic pain. Can understand dreading the next injection, sounds funny if it's worse after you have each injection... you'd expect the injection not to be causing your symptoms, but just not working. The Rheumy should be looking at all this for you. Urge you to contact them again and again, even if it's really hard to pin them down....All best wishes cat.
I have been on so many different ones and feel like I have almost tried them all. I am now on Orencia and I take Plaqunal which it has been a year and I am finally feeling like I can move better. It took a while for my body to respond but I kept telling myself I had to hang in there. So after 4 months it started to get better but it is now a year and I am doing ok, with an occasional flare. Good luck!
Blimey you've been thru so much. Well done for sticking it out - and thank goodness in the end something's working enough...Quite demoralising , the prospect of nothing working for ages. Sincerely hope your good run continues Olmettig
I took benepali for 6 weeks and was seeing an improvement in my RA. One day I just started to feel unwell and deteriorated quickly over a few days from there onwards. The rheumatologist suspected I developed antibodies, but it was never checked out. I couldn't take MTX alongside benepali due to the side effects. I now take leflunomide with a JAK inhibitor and all is well 🤞
That's interesting Mmrr, thanks. Glad it's not working for you
Never heard of this but hope you get some answers. I've been on adalimumab (imraldi) for 2 years (psoriasis and psoristic athritis) but starting to feel its impact declining as my joint pain is coming back and hand and wrist have swollen up. Waiting on a cortisone injection on the NHS (ha ha will see if that happens anytime soon) All the best.
Thanks Fuzzy, such a bummer when things stop working! Do hope you manage to improve too X
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