Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi there I am a new member, but I have been a member in the past! My name is Kate, im 23 now, and from England. I have had stills since I was 15/16. I live in Leeds, but I am soon moving back with my parent near Newcastle, in the north east, to start a teacher training course in September. I'm going to be a music teacher! I am currently on 7.5mg prednisolone, methotrexate 5mg a week, and Anakinra. My stills has been very 'up and down' since i was diagnosed, but never that well controlled, and i have never been able to come off the steroids for any length of time. My main problems are swelling in my knees, pain and stiffness in hips, fatigue and anaemia. I think my type of arthritis is classed as systemic onset juvenile RA, because i was under 16 (just) when it started, and it had a 'systemic' onset. Started with muscle problems, fevers, night sweats, bad bloods etc. I have been through nearly all of the new 'biologic' drugs available to be here in England - Enbrel, Infliximab, Adalimumab, and now Anakinra. None of these have worked particularly well, and i'm currently awaiting a new drug which hasnt yet been licensed, called Tocilizumab, or brand name 'Actemra'. I don't know if any of you have heard about it, but this drug has been developed in Japan and has had brilliant results with 'systemic' RA, particularly in children. It targets IL-6, which i don't believe any of the drugs at the moment do. I'm very lucky here in the UK that I can get access to this drug for free. The hospital are currently applying to the drug company for 'compassionate use'. I am very much pro natural remedies, and have built up quite a bit of knowledge over these years about natural ways to help our symptoms. It does strike me that in this group nobody seems to be trying any more natural ways to control symptoms? RA drugs are so destructive. I'd love to share some of this knowledge, and tips for books to read etc., if anyone is interested. Anyway just wanted to say 'hi', and let you know about the new drug. Who knows, it may offer some hope for us! Love and best wishes to you all, Kate x Quote Link to comment Share on other sites More sharing options...
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