Amy48: Hi I'm new to this site and found lots of your... - NRAS

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Amy48

Hi I'm new to this site and found lots of your experiences helpful.I've started a drug Tocilizumab once a month by infusion anyone having this treatment would love to hear from them.

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welcome to the site, not my meds but I`m sure some one will fit the bill.

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Thanks philip I've been on quite a few but because of a chest complaint this drug is to see if it's comparable with the RA and chest keeping my fingers crossed

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welcome amy, i haven't had those drugs, but i'm sure someone on here will now what your talking about. Don't be afraid to moan on here if you having a bad day,we are all here to support you one way or another. Lets hope this drug works. sylvi.xx

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Welcome to the site Amy. Ironically I put a question to the site only a few days ago asking if anyone knew of the above drug. My Rheumy has asked me to consider it or abatercept(spelling)? So any info on how its going for you would be welcomed. I have been on Humira,Embrel and just off Cimzia, like you I suffered with heart problem(enlarged) and other dreadful side effects. What others have you tried? Great having you on board.

Asa's mum xx

P.S Sylvi-Good to here you are doing O.K again. Take it easy now!! xx

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Asasmum I've tried quite a few but because I have achest complaint a lot of the treatments I could take it got to the stage that I was only taking paracetamol and codeine phosphate so as u can imagine it was like having a ice cream for excruciating pain so glad I got the chance to have this drug I have had a bad urine infection and chest infection at minute but it's lovely being able to do things I couldn't before x

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Hi Amy and asa's mum - late catching up with things on here, sorry.

I've been on tocilizumab by monthly infusion for nearly 3 years now. It has put me in complete remission and given me my life back. It doesn't work for everyone (no drug does with this disease!), but for some of us it's fantastic. You need to be careful with chest infections in particular, but in 3 years I've had just two bad chest infections, both treated with antibiotics.

Good luck!

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Hi fionajane glad to hear you have been on it 3 years and feel good I have had a bad urine infection and am chesty at the moment but it's lovely being able to brush my hair and other things we take for granted and less tears I usually have to have kenalog injections every 3 months I had my last one march the 1st so im keeping fingers crossed I don't need one anytime soon thank .

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