Appipra

[Adalisone]

Hello all, I've just had all my screening done to possibly starting the appipra drugs trial. Ive been tested positive for ra and ccp levels, but because I have no swelling I haven't been diagnosed with RA, Its likely going that I'm going to get it. The reason I'm going on the trial because at least this way I will get scans every couple of months. Have any of you guys started this trial ?? I'm on Arcoxia which really helps, but this just masks that pain and doesn't help with the RA. Thanks in advance.

[helixhelix]

Many of us here are diagnosed with RA, PsA, or SA so wouldn't be eligible. However abatacept is widely used by people and with a lot of success, so may well be great for you too.

I think trials are good, and would have loved to get on one as you get more attention and examination. And you are carefully monitored so if you end up getting the placebo and your symptoms deteriorate you'll be taken off the trial pretty quickly.

[Adalisone in reply to helixhelix]

Thank you so much for your response...I have gone from not having pain to having it spread from knees, feet, hands wrists and fingers in the last 8 weeks, I met with a rheumatologist and they said because I have no swelling I haven't got ra yet, but I have the antibodies that cause the pain and tested positive for ra and ccp. The trial is my only option at the moment, like what you said I figured that I will be monitored regularly so at least I'm being seen. I had a chest, foot and hand exray on Thursday and all my bloods done. She did say I have to watch for possible swelling on my finger, because if it is I won't be able to start the trial and they would refer me again to see a rheumatologist.

[Hidden in reply to Adalisone]

Sort of a catch 22, huh? Need swelling in one situation and none in the other. This is a hard disease in a lot of ways - the pain on one side, and the fatigue on the other... Hope they get it straight for you soon..

[Adalisone in reply to Hidden]

Thank you. I'm due to start the trial the first week in January.

[Hidden in reply to Adalisone]

Finger crossed

[Miag88]

Hiya, just wondering whether you got to start the trial? I have been accepted and injected for the first time on Tuesday. Mia x

[Adalisone]

Hello Mia, yeah I did. I’ve just finished a year on It 3 weeks ago xx

[Miag88 in reply to Adalisone]

Fab, banks for getting back to me. How did you find it worked for you? Was it the same for you in the sense you don’t know if you’ve had the drug or a placebo? Xx

[Adalisone]

Hello again, tbh after 1 month I stopped taking naproxen because the pain seemed to subside, and if I had any pain it was manageable. In saying that the last two months it started to return...I’ve been off the injections Since the beginning of January and just ordered naproxen again😩

It was a double blind trial, I won’t find out until the last person has stopped which could be 18 months.

How are you feeling in it ? I hope that you’re ok.

XxxX