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Rank: Newbie
Groups: Registered
Joined: 5/14/2012
Posts: 2
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 My name is Claire. Diagnosed 2 years ago and I'm 47. Married and with a 13yr old boy. I take enbrel and methotrexate and steroids. Am down to 5mg of steroids. I have tried to stop them altogether on two occasions and both times get to 2 or 3mg and suffer a flare. Nurses want me to try again, not sure about it, anyone managed to come off steroids altogether? Any hints or tips? Obviously I do come off them real slow, just a flare trigger when I'm down to two or three Mgs. Have just joined a Nras forum group too, we hope to put on our first meeting in July!  So much info on this site, will take me ages to catch up. Thank you for reading. Claire
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Clare
Welcome to the forum which I am sure you will find invaluable for advice support and somewhere to let off steam!
I am also on Methotrexate and Enbrel which at present is working very well for me.
Look forward to hearing more from you
Best Wishes
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hi Clare. I'm Naomi, aged 47, and I was diagnosed in September 2011. Welcome to the forum. I'm currently taking Plaquenil and am due to restart Mtx imminently. I hope someone can help with your steroid tapering query. I suppose I've been quite lucky in that each time I've come off steroids I've merely suffered a slight increase in symptoms which rumble away with mini flare ups but no devastating major flares as I've got down to zero. Good luck with the next try. Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi Clare,
Welcome to the forum, I'm Mary 52 and married with to grownup kiddies.
Only been on the forum a couple of months myself, have learnt lots. It's the place to be for info and good advice.
Hope you manage to get off the steroids on your next attempt, have not had any experience with steroids so can't help with any useful suggestions, but I'm sure someone will.
Hope to read more from you in the future.
Mary
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Clare, A very warm welcome to the NRAS forum - I`m glad you found us! There`s a wealth of info, advice, empathy on here, and usually someone around who can answer your queries. I`ve managed to steer clear of steroids so far, apart from the injections, so can`t help you on that one I`m afraid. I`m Kathleen, aged 61, and currently take humira plus various other painkillers etc. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Clare,
Hello and welcome to the forum, brilliant place for support and understanding and the helpline is always there if ever you need it too.
I am 56 and have had RA for about three years, I am now on the biologic Cimzia with methotrexate ( by injections ) and have over these years been on varying doses of steroids to help control the RA til it became under control. It is obviously extremely difficult for you to come off them if you suffer a flare in the course of trying to do so. I m not sure of an answer really, it might be a good idea to ring the helpline quite possibly others on here may have been in the same position and can advise a little better.
Best wishes Julia x
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Rank: Newbie
Groups: Registered
Joined: 5/14/2012
Posts: 2
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Thank you everyone for such a warm welcome. Look forward to reading up and learning new things and getting know you all.
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Claire, A warm welcome from me too, I am Lorna and have had RA for 4.5 years. I am married and have 3 grown up daughters, the older one married just 6 weeks ago. We are 30 years married this year. I was on the triple therapy but now for the last 3 years just Hdrox and Mtx. I was hit very hard at the start and was bedridden and unable to do much at all, BUT I keep really well and do not have any pain now. So hope is always out there, just keep positive and focused. Nice to hear from you, keep posting and ask away. Lorna x 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Claire,
Welcome to the forum! You'll get lots of support and advice on here.
I am 62, married to Ian and we have a 23 year old daughter. I am currently taking mtx and humira.
Good luck with coming off the steroids, I can't advise with that because I have never taken oral steroids but I know lots of people have managed to come off them.
Looking forward to getting to know you.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi there,
Welcome from me. You will find this forum and site excellent.
I am Rose from Somerset aged 58, married with 2 adult children and 1 grand daughter.
I was diagnosed in 2008.
Keep posting
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Claire
I'm 50 now with 3 grown up children. My 23 year old also has RA!
I have managed to get down to 1 mg of steroids but I can't seem to get any lower. I went down one month at a time - dropping 1 mg a month initially until I got to 5 mg, then I went 0.5 mg per month, using the 2.5 ones. (ie 5mg one month, 4.5 mg for one month, 4 etc). The problem comes when you get to 2.5 mg for one month, then 2 mg - then the next drop has to be to 1 mg - but I did 2mg one day then 1 mg the other for a month, then managed to get down to 1 mg. Every time I try not taking it, I get so stiff, so I haven't plucked up the courage again!!! The consultant said try 1mg every other day for a month, then 1mg every 2 days, then 1 mg every 3 days etc - a month on each dose.
I am also on azathioprine and humira - but am off to Israel in 2 weeks - and am allowed to bump the dose up to 10 to 15 mg again while I'm away.... then I have to reduce slowly again!!
It is really difficult getting off them.... and I am still waiting for the azathioprine to work properly as well.
So as long as your other medications are working well, you could try this very slow method and see if it works! I'll be back trying again over the summer!
All the best
Anne
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Claire,
just wanted to say welcome to the Forum.
you will get so much help and knowledge on here,
i've never taken steroids ( only depo injection occasionally ) i currently take Methotrexate 10mg, Hydroxy and Humira.
i'm 59 married with a 30 year old daughter long flown the nest .. keep posting
Suzanne
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