Humira not working

[Susiequest]

As my biologic is not working anymore have been given a choice of two one being Sarilumab and the other Abtacept how do you choose the right one? Have had tocilizumab which was great for about 16 months then it just stopped working also tried Bengali which didn’t really do anything tried looking online but not enough details to make a decision has anyone tried these medications?

[Blodynhaul]

Hi Susiequest, sorry to hear Humira isn't working. Afraid I can't advise on the other drugs, but I just started Adalimumab/ Humira 5 weeks ago and had no improvement yet. Did it work for you at all? if so for how long & did you have problems & side effects with it?

[Susiequest in reply to Blodynhaul]

After 12 weeks had some improvement but not for long had flare ups one after another so ended up on high dose prednisalone again.

[Blodynhaul in reply to Susiequest]

O dear, sorry to hear that Susiequest.

[Green230461 in reply to Blodynhaul]

I was on humira for ten years jabs every two weeks it was great. Then stopped working after a bad bout of shingles. Now on baricitinib which took three months to kick in and is also very good.

[Emye343 in reply to Blodynhaul]

Hi, I’ve just had my sixth injection of humira without any improvement in symptoms. (In fact my ra is just getting worse - every day it seems). Did you rheumatologist give you a timescale for how long to continue with it before giving up on it? Mine said three months but I’m starting to get worried about long term damage with all this extra pain...

[Blodynhaul in reply to Emye343]

Hi Emye343, very sorry about your situation after having 10 weeks of injections. The info seems to say it usually kicks in between 2-12 weeks....I don't feel confident that will happen though, but keep hoping, meanwhile feeling so awful - plus side effects. Side effects you can mainly tolerate and deal with if the actual treatment is helping the RA, but when it's not....! All I was told by the Rheumy was that most people say it 'works almost straight away'. Hmm. The 12 weeks ties in with your 3 months, more or less. I'd get hold of them & try and get an appointment ASAP, or at latest to tie win the 3 months. Get bloods done a week before so they have the results to see too. I'm the same - concerned about long term damage as already having some worrying effects. I have a pre-arranged phone call with the Rheumy on the 19th, so trying to hold out till then (& having bloods this Thursday a week before that). If I try and see a GP it will only mean phone calls, explaining everything to people who don't know much about what's best. Really hope you can get answers SOON & feel better. Take care X

[Emye343 in reply to Blodynhaul]

Hi Blodynhaul,Thanks for your reply. I’m sorry to hear that you are getting side effects from the humira on top of it not working. I’ve just had a bad head and tummy upset but, aside from that, it’s been ok side effects wise. I came off Enbrel because it gave me awful gastritis ( currently on the waiting list for a gastroscopy to see what damage has been done), so I’ve got quite a sensitive stomach where medications are concerned.

My problem is that I live in Guernsey and we have no resident rheumatologist. We have to wait for one to fly in occasionally from Southampton and, as you can imagine with this pandemic, this doesn’t happen often. In fact, I have friends with ra who haven’t got to see their rheumatologist for over 2 years now ...Mine has come a bit more frequently but there is no guarantee as to when I will next get an appointment with her so we are very much left in limbo. We have a part time rheumatology nurse for whom we can leave a message on a helpline but, as she also runs the fracture clinic, she is very busy and gets back to us when she can. Not that this does much good as she se3ms to have no control over appointments! So, I’m not sure what to do when my 3 months are up - which they will be at the end of this month. This is a big downside to living here. - also the fact that we don’t have the nhs - but that’s another story! Anyway, I hope you start to feel the benefits of the Humira very soon. Please keep in touch and let me know how you get on. X

[Hessie5]

Hi, sorry to hear your biologic not working. I am on the Abatacept since 2019 - apart from the pain in my left hand, I presume these meds cant reach everything. It's been okay to date. I was supposed to take it with leflunomide, but the combo didn’t work for me. All the best with your decision. - Hessie 🙂

[Tkat10]

Ask for further information from your rheumatologist, the different drugs sit in different groups and if one doesn’t work there is usually a next option in the treatments available. They are bound to ensure you fully understand your treatment options post a no response, they have all the research at their fingertips. It is always a hard decision to make but with all the information and a full and Frank discussion with your rheumatologist you should be able to find the one for you.

I am currently in weekly abatacept injections after poor response from tozelizamab and previous side effects to monthly infusions of abatacept. So the other issues are that sometimes a good response but bad side effects can be worked around. I have confidence that you will find the drug that works for you and your arthritis.

[helenlw7]

I’ve been taking Enbrel (etanercept) for over 10 years and for most of that time it’s been brilliant - I’ve not been pain free but I have been able to do my job and look after my children. About 6 months ago I had the feeling it had stopped working, I was in more pain and less mobile. After consultation with my lovely rheumatologist it’s been decided I should change to a JAK inhibitor. Unfortunately there are issues with my liver, probably caused by the mtx, so I’m off for a liver scan today to see if there’s any damage.I hope you get sorted soon.

[Fra22-57]

I tried three that never worked.My 4th is Abatacept which has.Thing is ,they are the experts so why is it that we have to choose.It’s crazy..they are the experts.I was told I was going on Abatacept then at consultation with specialist nurse the rheumatologist rang offering another so I stuck to original and it does work for me Hope your choice does

[Susiequest]

Thank you for your answers will discuss with the Rheaumatology nurse this week hope this one works fingers crossed .

[Green230461]

Sorry to hear about humira I had the same after ten years. Now on baricitinib and it is great. So look into that if you can! Good luck. 😉

[Hidden]

There is no way of knowing what will happen with either. Look at all the possible side effects and also how the way they work with your body - . I was given 3 options and chose Abatacept because I have had numerous side effects - some very serious -with different RA medicines over 20 years. I also do not want to increase my weight. Abatacept is working for me 9th injection in and no side effects so far. It is not an Anti TNF(Anti TNF caused me great problems)- and blocks different cells. I did my own research through a need to be careful. I am not a trained medical professional.

[Susiequest]

They said could take up to 12 weeks for the drug to kick in.