When to give up on a biologic (abatacept)

[Julieladix]

I have posted on here before about the length of time it took for abatacept (orencia) to work. Well I’m at five months now without the slightest change in my symptoms. I don’t know if I am wasting my time , or if waiting another month will make a difference. Has anyone had the experience of it not seeming to work, and then boom, one day you just feel much better? If this did occur, how far along were you? Thanks 🙏🏻

[Eiram50]

Hi julieadix

I initially started on humira , which I took for maybe 8 months, with no effect. I was then changed to enbrel with ( initially) a slightly more positive result. I am now about to change again.

Some don’t seem to have any effect, some work for a while the lose their efficacy? All trial

And error, I guess, finding the one that suits best.

What I will say is that even the enbrel had no noticeable effect until maybe 5 months in.

Wishing you the best of luck going forward

Marie

[farm123]

I would say it was nearly 9 months for me. There was gradual improvement from 6 helped by the addition of hydroxy. I have been on this for about 4 years now with a break for a tkr but it has changed my life. We kept on because at the time there were limited options for me. Farm

[Matilda_1922 in reply to farm123]

I’m about to start benepali and was really hoping it will works

[Julieladix in reply to farm123]

Wow farm123, you are making this a difficult decision for me! Lol! I’ve heard stories like yours before. I just wish I knew if I stick with it, it would work. That’s something the pharmaceutical companies should work on. Figuring what medications would work for who. It’s unbelievable that everyone with ra responds differently to different medications. Humira was a miracle drug for me, but since it stopped working, I can’t seem to find something that will.

[lornaisobel]

Ive been on Orencia for a few years -2 I think - and I can remember it didnt start to work for a few months and then it was only very slowly - Im good at the moment so dont give up -give it a few more months xx

ps Humeria for me was amazing for a short while but then for some reason it just stopped working - My consultant did explain it to me but I couldnt for the life of me remember what he said ask yours why some drugs work for some people etc

[Hobbits]

When starting Remicade I was told by my Janssen BioAdvance Coordinator that if I don’t have any results by fourth infusion then it’s time to look at a different biologic. I believe this time frame doesn’t include the initial loading doses, but the 6-8 week maintenance dose. I was told also by pharmacist suppling the Remicade that I should feel better by at least the second regular dose ( not 2nd loading dose) and if not, then for sure by third or fourth. But everyone is different.

Hoping your meds kick in, if not please go back and tell them it’s not working.

[allanah]

When do you see your Rheumy again. I think he will advise you based on your symptoms, DAS score and blood inflammation levels whether or not he thinks it's working.

Some of mine didn't work and he swapped me after 6 months. Some did ..a bit but then stopped so I got swapped. It's taken a few years but now by trial and error I have tocizilumab economics and hydrochloroquine which work for me.

Wouldn't it be great if there was a test that says this drug is the one for you ! Maybe the pharma folks wouldn't be happy about that!

[Julieladix in reply to allanah]

Hi Allanah. I just responded to farm123 with the same thing as you said. It would be really nice if they could figure out what would work for who, before waiting the six months. I hate to feel like I’ve wasted time when there is something else that may work. They sure don’t make it easy.

[allanah in reply to Julieladix]

Nras have just put up a NICE advert for people to give such suggestions!

[Furle]

Hi , I was lucky with Enberel as it worked for me almost instantly . It was my first biologic after about 10 yrs on various dmards. Best to let your rheumatology team know it’s not working.

[premierscfc]

Sorry julieladrx to read that Orencia/Abatacept has worked so far, did you go onto something else or did it start working?

I ask as I've had my first injection today.