Hello everyone. I need your help here. I am at present on Tocilizamub, which isn't working at all, I have been on it since last November. I was with the jr doc yesterday and she has confirmed that the RA has actually spread since I have been on it. Anyhow she has recommended that I be taken off the to Tocilizamub and be put on a drug I have never heard of called, ADATACEPT. Now this all has to be confirmed by the big man himself who the jr arranged for me yesterday.
Does anyone know anything about this drug? I know when I see the rheumatologist I will be able to ask more questions but I want to ask here too.
I have been on MTX, Humira, Enbrel and Tocilizamub. I had to come off them all due to side effects. I get the feeling that I am coming to the end of the road with regards to alternatives.
Maybe I'm over reacting but I would love to know if any of you have any info about this drug. I have googled it and I had a bot of bother finding much info on this drug other than it is used in the treatment of RA and that it is a T-cell inhibitor. Any info would be appreciated.
Hope you are all well. XX
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jeanabelle
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Thanks, for the spelling correction. All the other drugs I was on I had to write them down and teach myself to pronounce them! Is it rearly used? I've never heard of it before in the rheumy ward or on this site. Do you know if there are many other drugs for me to try? I really am trying to be positive but I have been disappointed so many times in the past.
Tocilizamub never worked for me from the beginning but Humira was great and worked within days. Enbrel was the same but again side effects took over and I was moved on to Tocilizamub. When I was first diagnosed I was put on methatraxate, like everyone else, but with in weeks it attacked my liver and it was then that I was put on biologicals.
I would love to hear from anyone who has been on it and how they responded to it or not if that is the case.
There are other DMARDs you can still try out such as leflunomide, Gold abd Sulphasalazine. and other biologics too such as Cimzia I think. You RA must be quite severe for you to qualify so quickly for anti TNF. Don't despair something will work I'm sure. Tilda x
I have been on sulfasalzine too but was taken off it too!!! You know before I took RA I never had an allergic reaction to any kind of medication. I did have a reaction once to sea food but that was years ago. I didn't think they still gave gold injections anymore and I'm afraid I never heard of Cimzia. I hope your right about there being more options left for me....every time I'm taken off a drug my nurses say " jean, what are we going to do with you?" I know they are only carrying on with me but I have started thinking, is there much more for me to try? I'AM I being paranoid? Thanks for the reply Tilda. X
No you aren't being paranoid - just very unlucky. I'm the same - been through sulpha and had a really scary reaction to it, then MTX which was fine until I got to a higher dose when liver and side effects became an issue. Hydroxy gave me a rash and didnt work. Then switched to injections which did help for a while but not enough and now things are worse than ever. Poor you it sounds as if your RA is bad compared to mine though. Maybe if this abacept doesn't work you should ask about Simponi and Cimzia as both are anti- tnfs and you already qualify.
No you aren't being paranoid - just very unlucky. I'm the same - been through sulpha and had a really scary reaction to it, then MTX which was fine until I got to a higher dose when liver and side effects became an issue. Hydroxy gave me a rash and didnt work. Then switched to injections which did help for a while but not enough and now things are worse than ever. Poor you it sounds as if your RA is bad compared to mine though. Maybe if this abacept doesn't work you should ask about Simponi and Cimzia as both are anti- tnfs and you already qualify.
Thanks Tilda, I will write those two drugs down and keep them for the future. My RA people are 1st class, I know I am very very lucky to have them. I will be able to ask my consultant more ?'s when I see him at the end of the month. This Abatacept will be my seventh drug! Am I worrying for nothing? Thanks for the reply, every wee bit of info does really help. Your a star. X
No you aren't being paranoid - just very unlucky. I'm the same - been through sulpha and had a really scary reaction to it, then MTX which was fine until I got to a higher dose when liver and side effects became an issue. Hydroxy gave me a rash and didnt work. Then switched to injections which did help for a while but not enough and now things are worse than ever. Poor you it sounds as if your RA is bad compared to mine though. Maybe if this abacept doesn't work you should ask about Simponi and Cimzia as both are anti- tnfs and you already qualify.
Thank you for getting back to me. I have to say I am a bit concerned as I have never heard of it before. I also spelt it wrong, it is called Abatacept. From what I could find out it is still in trials. If it works I won't care too much. Yes my RA was rampant and went through me in a matter of a few months. It's in my eyes, neck, jaw, shoulders, elbows, wrists , hands and knees. I also have a thing on my heart lung too but I can't pronounce it lol. I really wish I could speak to someone who has been on it. Thanks again for getting in touch.x
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