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Date: 28.10.2012
From: Jen

Subject: new here, looking for thoughts on meds.

Hi I am new here. 34 yo with Juvenile Rheumatoid Arthritis. I was diagnosed at 18 months old so Arthur has always been part of my life to varying degrees. I have been on adult doses of painkillers since i was 5 years old and been on pretty much all arthritis meds going. I was banned from NSAIDs about 10 years ago as my stomach is not strong enough (I blame the 2 years of brufen when i was a teenager. I seem to react to most standard meds-sulphazalizine, lefludamide?, gold, MTX etc. About 5 years ago I was put in Infliximab and had the best 3 years of my adult life. 2 years ago the NHS decided to move me onto Adalimubab?, I then had then worst year of my life climaxing in me completely seizing up and being hospitalized for weeks:-( After maxing out on steroid injections into my joints I was put back onto infliximab Yipee!instant mobility but....I am still not back to my best and that has been a year now. My fatigue is really bad and I am only noticing improvement in my joints for 3 out of the 5 weeks between infusions.
My Consultant has agreed to try me on something else(the choice is limited, poss abatacept?)I have an appt this week at the biologics clinic to get things moving.
I work full time as a teacher but I am only coping with my job by adjusting my work and sacrificing my social life. I spend most weekends on the couch or in bed. I could never go out on a school night. I end up cancelling plans a lot. I really don't want to stop work but for the first time i have considered cutting down on hours but financially it would be very tough.
My joints have held up well but my knees are beginning to go and my elbows and hips are following them.
Am I asking for too much? What anti tnf, DMARDS are people using, any good/bad points? I got a steroid injection the other week which has helped a lot, I wish I could get them frequently but I know they are bad for the bones long term.
Sorry for the loooonnnnng post.
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Date: 28.10.2012
From: bsk

Subject: Re: new here, looking for thoughts on meds.

Hi Jen

Welcome to the forum!

I have had two biologics, Cimzia and Enbrel (etanercept). Cimzia did nothing for me and I got ill all the time. I now take a half dose of Enbrel in order to cut down the infections and I think it is good. I still get infections but they are easier to treat and not as severe.
No other side effects I can think of and my mobility is not too bad. Not perfect but then only on half dose. Not sure how I would be working on it. I have RA by the way.
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Date: 28.10.2012
From: Two hip replacements and still going!

Subject: Re: new here, looking for thoughts on meds.

Hi Jen, I also have juvenile rheumatoid arthritis (diagnosed at 14) and I am also a teacher. My arthritis has been pretty well controlled since I started on anti-tnfs in 2008. I originally took Enbrel, leflunomide, diclofenac and deflazacort (steroid). I managed to get off the steroids and diclofenac. Unfortunately the Enbrel stopped working after 2 and 1/2 years. I had just started a new job and teaching reception. Like you had to rest in the evening and at weekends until they sorted me out with Humira, leflunomide and methotrexate. Currently my elbows are swollen and painful and my gp has given me diclofenac to tide me over until I go to my anti-tnf clinic on Tuesday so they can sort me out. My gp wouldn't give me a steroid injection when I asked. Ruth
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