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Rank: Administration
Groups: Registered, Administrators
Joined: 3/20/2012
Posts: 87
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Dear Members As you know we will be holding our Members Day in a few weeks' time at Taplow Court near Maidenhead. As part of this event, we will be holding a Q&A session with a panel of experts made up of members of the multi-disciplinary team. However, for those who cannot attend, we will be filming the event and putting it on the Members area of the website. We would also welcome any questions that you would like to put to the panel. Please reply to this post or email your questions to membership@nras.org.uk and we will endeavour to get through as many as possible on the day. With best wishes Emma NRAS Membership Supervisor
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I would love to know why there is so much discrepancy in the taking of folic acid-we all seem to be told different times, different doses, different days etc. Why is there not just one agreed system to give the best effect? Thanks YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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I'd like to know what are the actual guidelines about when to start taking biologics - how long must we try with the dmards and what is the definition of fail? Also I'd like to know why we don't all start on biologics from the outset - rumour has it that they are better overall, so is it just the cost that stops them from being used as the first line of attack? Thanks - Sylvia Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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emma,my question is, i was not made aware of the fatigue i might experience with ra and just how much it would affect me at times or about how to pace myself, can this be talked about in future at the begining of our journey by the nurses,also hair loss is another missed chat and i agree the folic acid and mtx?,explaining things would be lovely all i got was this is what doc said you are to take this is how read the leaflets get bloods done etc etc and you will see the doctor in 6 months phone nurses if a problem ,it seems some clinics are well informing and others are not surley it should be standard to tell us roughly what may or may not happen,we know how busy the clinics are but 2min is all we need for reasurance,after all they have the knowledge we are mearly the students learning about our own bodies,dorothy
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hello Emma My question is: how do doctors decide when it is time to add another set of meds in the mix? Is it based on the most recent score following blood test? Or measured from the last few blood tests? Thank you. Jane 
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I'm interested in why consultants prescribe such varying doses of Mtx. I know people on only 5 mg whilst I'm on 20 and others are on 25. it doesn't seem to be related to the severity of the RA so is it down to the consultants having different opinions on the most effective dose?
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Rank: Administration
Groups: Registered, Administrators
Joined: 3/20/2012
Posts: 87
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Excellent questions received so far! Please keep them coming - we'll try to get as many of them put to the panel as possible :o)
Best wishes,
Emma
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hi Emma I have another question! Once someone starts to have ra attacking the joints so much so it requires surgery......one bunion\hammer toes op done, one in the offing, and knee surgery (waiting for orthapedic surgeon appointment) does it mean down hill.....and in the hamster wheel of surgery? Thank you Jane X
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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I would like to know how you can have near normal blood test results for inflammation but still be in considerable pain and have severe joint damage resulting in replacement surgery.
Jackie
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Rank: Newbie
Groups: Registered
Joined: 7/25/2012
Posts: 1
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JulieM wrote:I would love to know why there is so much discrepancy in the taking of folic acid-we all seem to be told different times, different doses, different days etc. Why is there not just one agreed system to give the best effect?
Thanks
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Rank: Administration
Groups: Registered, Administrators
Joined: 3/20/2012
Posts: 87
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Hi Zoe-P,
Does your post above mean you wanted to reiterate the same question that JulieM asked, or did you have a separate question to put forward? Just wanted to check :o)
Thanks,
Emma
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Emma - well done to NRAS for getting 4000 members! In your press release I like the photo but wondered which one are you? I recognise Ailsa, but not the other 3. Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Emma
I'm sure that the Members Day was a few weeks ago, is there a link to see the questions and answers?
Paula
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Rank: Advanced Member
Groups: Registered
Joined: 12/6/2009
Posts: 81
Location: norfolk
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We are all told that RA attacks the feet - why is it then that at no time does the rheumatologist or rheumy nurse ever check the feet - even when you say they are swollen?
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Rank: Advanced Member Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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hi susan i was told that the podiatry would check my feet at every appt as doesnt happen at rhumy clinic but they dont,but i do make a point of saying if i have a query,then told to mention it to rhumy as per a catch 22,dorothy
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Hi Emma, has this happened yet? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Any news please? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Administration
Groups: Registered, Administrators
Joined: 3/20/2012
Posts: 87
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Hi Julie,
All of the videos have had their editing done and been approved by the speakers involved. We are just waiting for our external website hosts to upload them for us. Sorry for the delay and soon as they are ready I will let you know.
Kind regards
Emma
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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No problem, thanks Emma. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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