How long does orencia (abatacept) take to work?

[Metal-legs]

I've just done my 5th injection of orencia and my joints are still so swollen and painful. I think the drug is working a bit because I couldn't get out of bed a few weeks ago, I was sleeping all the time, that has improved. Has anyone any experience of abatacept by weekly injection, it's such a long waiting game. I have been advised it will take 12 weeks to take effect.

[cathie]

None, sorry but I do hope you start to feel benefits soon. I'm keeping a diary about things I can do that I couldn't do before I started enbrel. Not much yet, but one or two things worth noting. Like being able to open the loo cleaner which needs you to squeeze and turn at the same time. Child and RA sufferer proof!

[Metal-legs in reply to cathie]

Good idea keeping a diary, I have been doing that. enbrel was a miracle drug for me 9 years ago, completely changed my life but did take 12 weeks to feel effect. CRP went from over a 100 to 3. Hope it works for you cathie

[cathie in reply to Metal-legs]

Are you still on enbrel? I'm glad it's worked for you

[Metal-legs in reply to cathie]

no I had to come off Enbrel as it stopped working after 8years.

[farm123]

I did notice a difference fairly quickly (after 4-6 weeks) but then it seemed to plateau at a level that although is better than I was previously is still not enough to enable me to 'have a life'. Am due another assessment towards the end of May which will be about 6 months. I am not asking for normal as after 27 years do not know what normal is but something that I can more easily manage and not so up and down all the time. Farm

[Metal-legs in reply to farm123]

Are you taking the injections or infusion? Can't find many people on the injections, they are quite new. I have read that it can take up to 6 months to see full effect. We just want a managable, stable condition don't we? I understand what you are saying, I have had aggressive R.A for 14 years now, so many joints replaced, Enbrel has been the only drug that worked out of a long list. Hoping orencia brings some relief soon.

[farm123 in reply to Metal-legs]

Mine are weekly injections - I think the self injections were approved by NICE around April time last year. There are a couple of others on injections that have posted during the last couple of months. Like you Enbrel has been the only other biological that has worked (around 8 years) and was on gold injections for around 7 years before that - tried Humira, Rituximab and Tociliuzimab over the last couple of years before starting Abatacept last November. Fortunately I have not had to have joints replaced yet but that will come. I am sero negative. I think like Smith7 I feel I am also in a better psychological position than before starting Abatacept but whether that is just because I am not as bad physically as I was before I don't know. S

[allanah]

I had my first infusion last week and same as you was told 12 weeks .. Ish ! but some people much better after only a couple of weeks. I am gonna whisper this but I do feel less tired and knees not so bad sssdshhhhh, maybe psychological lol , we will see. Good luck and we can clare notes. So far main problem is insomnia for me! Xx

[Metal-legs in reply to allanah]

Good sign if you are seeing some improvement. I feel less exhausted but that's all, joints are rotten. Hope it works for you, best of luck.

[Smith7]

I wad due my 8th infusion but changed health authorities, waiting now to hear if New consultant will allow me to continue abacept. From what I am now feeling, I was definitely in a better place physically and psychologically on regular treatment.

[Metal-legs in reply to Smith7]

Hope you can continue with the infusions. Good to hear it worked so well, it makes me feel a bit more positive reading your message, it's such a challenge waiting for these drugs to work or not.

[cathie in reply to Smith7]

when I moved from Oxford to Edinburgh I was on infliximab and it was automatic. Noone ever questioned that i should continue on the meds. I think that's your right!

[Jeanabelle60]

when i started abatacept in injection form (via infusion for 6 months before that) in july last year it was a few weeks, maybe 6 before i felt any difference. but when it started to work it was just miraculous........i had been almost pain free until about a month ago when i had a flare up......the tail end of the flare is still there but nothing like it was at its height. for me abatacept has changed my life. i have to say the flare frightened me as Abatacept is my fourth bio....i'm beginning to get back to myself again. for me it is the best drug ever. i hope you find the same results. keep us informed about how you are getting on please. X

[Metal-legs in reply to Jeanabelle60]

Really good to read how well you are doing on Abatacept, as I am in a really low state at the moment. It must be lovely to get your life back on track again, will keep you posted how I progress. Hope Abatacept continues to be the best drug ever for you.

[Sailaway]

I'm on the weekly injections, just had my 7th earlier this week. I'm not feeling any benefit yet, but my GP has another patient who is doing very well on it and she only started to notice a difference after a full 2 months, and it can take up to 3 months.

[Metal-legs in reply to Sailaway]

It's just such a long wait isn't it? How are you coping? My joints are just so swollen and painful, life has come to an absolute standstill and each day is a major challenge. Hope the injections work for you.

[lab-lover]

Probably had about 14 injections, I have had no flares and my fingers don't hurt as much, since being on abatacept.

[Metal-legs in reply to lab-lover]

Thanks for your post, it's encouraging to read when someone is gaining benefit from a drug. Can't imagine my fingers not hurting, hope the effect keeps on working for you.

[Smith7]

I called in the cavary ie my previous Ra specialist nurse who spoke to my previous consultant, I say this with a great big smile as I have been asked what my weight is for an appointment in a couple of weeks time, for my infusion. Can't wait. Thanks for all responses.

[Metal-legs in reply to Smith7]

Great news!!!, hope the treatment goes well for you

[katidid]

I just had my 13th injection and maybe this is all in my head but I woke up this morning and said "I feel normal". Energy-wise I think Orencia makes a big difference. I have AS, so it's slow to act and experimental, but it really did get me out of a pit of exhaustion. Fingers crossed it will start to knock down the joint paint and inflammation.

[Julienewsome2222]

I've been on abatacept for 13 weeks with no luck so doctor stopped it yesterday so they are giving me patches to control pain and to see if I get worse and if I do that means the drug worked ,I don't believe it will work at all ,of it was going to it would have ,I'm wondering if methotrexate should have been given to me at the same time as I've read they normally give them both together but they didn't give me that .I've just rung my consultant as I'm not happy that they havnt discussed any other alternatives with me ,they just said to get pain under control first then wait to see if I get more pain well I don't want to wait to see if I get more pain ,I've been a study of there's and I think they are using this as part of the study ,I want to be pain free

[Iluvgardening]

I have been on Orencia infusions less than a year. It took me a couple of months before I felt a difference. After the two months, I was able to close my hands for the first time in a very long time , that is how I knew it was helping with some of the inflammation. I get the infusions every 4 weeks, I do have extra fatigue the first couple of days after infusion, but I haven't experienced any other side effects. Of course I am not pain free unfortunately, but it does help with inflammation. I am hoping it will even get better in time. I have tried alot of different biologics and this one has helped the most so far. I hope you get relief soon.

[Caribbeandiva in reply to Iluvgardening]

Be careful with Methotraxate. For some people, like me, it has scary side effects. I tried it in three different times and aways had to stopped because was affecting my liver. And that side effect showed up with the very first dose of taking it. But, every person react differently, what is not good for me, can be good for you. Just, be careful and keep an eye on the side effects

[KittyJ in reply to Caribbeandiva]

I think you might have meant to comment on another post as this one is about a biologic ?

[jobredin]

I have been on Orencia for 6 months (weekly injections) and it has helped slowly get me off the sofa! I had a very swollen knee issue that has got better very slowly but I seem to have reached a plateau and its not helping with painful wrists or swollen heels. I met my consultant who suggested changing to Tocilizumab as Orencia just not giving total RA relief. I'm hesitatant as currently have no side effects with Orencia and wonder if I should give it a few more months as it really has been a 'slow burn' drug. I have read that some people take up to a year to get full benefit. My blood tests today show my CRP and ESR has come back to normal compared to when I started the drug. CRP was 77 now down to 6 and ESR down from 31 to 8. 🤷

[Intheend in reply to jobredin]

I could literally have written your text!I too have been on Orencia for 6 months with some slow improvement but have a recalcitrant elbow joint which continues to be troublesome. My CRP is in normal range (>5)

My Consultant has also just suggested a change to Tocilizumab and like yourself I am reluctant due to fact that Orencia has brought little in the way of side effects and the info for Tocillizumab suggests it may have more🤦🏻‍♀️

I , like yourself, keep hoping Orencia will continue to improve things.

Hopefully people who have been on it more than 6 months might be able to give us so insight into whether things might continue to improve if we persist

[jobredin in reply to Intheend]

Interesting report - look at page 34 - accessdata.fda.gov/drugsatf...

[Intheend]

Thank you for sharing… as to say it is interesting