Abatacept Trial (ART): Hi All i"m looking for your... - NRAS

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Abatacept Trial (ART)

Mistydawn profile image
9 Replies

Hi All

i"m looking for your experience of taking Abatacept for RD please. Anybody on the ART trial?

I have given in after failing on HCQ and MTX and being in a lot of pain to try abatacept. I understand this drug is approved for RD and was offered it as part of a trial or without being in the trial group. I have yet to find out what the trial entails but wondered if any of you Guys knew anything about it.

Thank you

Mistydawn xx

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Clare-NRAS profile image
Clare-NRASPartnerNRAS

Hello there, you can find out more about this particular drug for RA at nras.org.uk/abatacept-orencia-

I am not familiar with the ART trial but NRAS could try and find out a bit more about it if you'd like.

Also please never think of it as "have given in after failing on...." YOU Haven't failed anything or given in ....it's the drug treatment that has failed to work but the good news is there are lots more now available to try for those that have disease that cannot be controlled with DMARDs.

I regularly correct clinicians etc. who use that phrase about patients failing on particular medications....as if it is their "fault"...it so isn't. Your disease may fail to respond to particular treatments not you as an individual.

I hope the abatacept works for you and gets your disease under control but if it doesn't then there are other options to consider- don't lose hope.

If you'd like to talk to the NRAS helpline call for free on 0800 298 7650 or email enquiries@nras.org.uk for more information.

Mistydawn profile image
Mistydawn in reply to Clare-NRAS

Thank you Clare for both replying and for giving hope - really appreciate it.

I am waiting to see and ART trial team but if it is easy enough for you to find out more I would be grateful. I could not find anything on the internet.

Thanks again.

Usha

Clare-NRAS profile image
Clare-NRASPartnerNRAS in reply to Mistydawn

Hi Usha

Sorry I don't always check HU for posts- I did make enquiries about the ART trial with researchers I know at Kings College Londone/Guys & St Thomas' but they didn't know about the trial and I've checked the NIHR gateway to research and can't find it either. Sorry to not be of more help.

Do let me know more when you've met the team but best to email me at clare@nras.org.uk as i don't check HU regularly.

Beaches2 profile image
Beaches2

Hi

Sorry I can't help re the trial, I've not heard of it, but I have been on abatacept weekly injections for just over a year now. It took a few months to " get going" but I'm really good on it now. Almost as I was before ......yeah.....

I've had no side effects that I am aware of, no site reaction and it doesn't sting.....in fact can't even feel it going in......so great 😊.

Hope you do as well on it as I have.

smithfield profile image
smithfield in reply to Beaches2

Wow that sounds positive.

Mistydawn profile image
Mistydawn in reply to Beaches2

Beaches, your experience is so encouraging! I hope mine is too 😊

nomoreheels profile image
nomoreheels

Hiya U! I'm sorry that both HCQ & MTX have proven to be rubbish for you but do hope, aside from that you're otherwise ok? I had a bit of a rootle around 're the ART trial & came across this from the NIH in the US (quite why I can't pinpoint anything relating to it here I'm unsure!) Anyhow, this takes you to it clinicaltrials.gov/ct2/show.... You'll see that under "Criteria" it does state "In the UK, the ART substudy will be proposed to all patients enrolled in ASCORE from amendment approval and application date".

Not quite sure how helpful I'm being here but I hope if you do participate you find it beneficial & you romp away! You deserve to & it could help many others. x

farm123 profile image
farm123

I started Abatacept self inject in November 13. I was very ill/disabled at the time having tried 3 drugs in the previous 2 years without success. It was slow to work and probably the addition of 200mg hydroxychloroquine and a couple of joint injections really was the turning point at around 9 months. Before then it was struggling to work but once things had calmed it has worked well since even an interruption for a TKR. I still have my limitations but compared to the way I was before I started there is a large difference. Farm

Mistydawn profile image
Mistydawn

Thank you all for your support. Sorry Farm it took awhile and also needed additional medication for it to work. I guess we are all different but I do so need something to work xx

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