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Rank: Advanced Member  Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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Hi everyone had a surprise phonecall from nurse yesterday , saying that doc wanted to get started on considering me for biologics , apparently I have to have 2 DAS28 scoring tests a month apart , got to go tomorrow ! ( quickest appointment ever , stunned ) been having a look what this is involves and a bit worried that although I have a lot of pain in various joints , there isn't spectacular swelling , although I can see that for me there is some difference , does this affect the score ? trying not to get my hopes up 
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Julie,
DAS scores are part of seeing how your RA is going,
checking joints is one part, 28 joints i think are taken into consideration.
your bloods, again though have to say my Rheumy Consultant goes on more on how i feel than numbers.
and lastly asking you how you feel on a score of 1-10, or 1-100, this is where i always had a long chat cos it entails everything as far as i'm concerned.
it took me 18 months to get from being diagnosed to be put onto a Biologic, having failed on Methotrexate and Hydroxy ..having said that my PCT dragged their heels and from memory had about a 6 month wait with a lot of pushing from my Rheumy Nurse.
anyway wish you good luck for tomorrow, let's know how you get on.
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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thanks for the info. Suzanne , I'm not holding my breath , it's frustrating though having to wait so long for everything , guess we all want the same , to feel better . will let you know how I get on x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Julie Hope this helps https://healthunlocked.c...ease-activity-score-das
I'm on anti tnf's and I've never really had any visable swellings apart from my fingers and then only slightly. I didn't think they looked all the bad myself but at my first assessment the nurse remarked that just by looking at my hands she knew I would score enough to qualify. Anti tnf's have given me my life back so I hope that if you do qualify you get the same results. Paula x
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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Hi all just had my appointment , I was as usual worrying unnecessarily, the nurse was lovely , said I looked really ill ( thanks , I know ! ) and said after about 5mins that she was pretty sure my score was high , was 5.6 so got to go in a month to see if any change, apparently I also have low vit. D. anyone else had this ? she said I needed more sun but wouldn't prescribe me a sunshine holiday on the NHS when I asked her so have to have tablets instead. thanks for the advice x
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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julie_warwick wrote:Hi all .... apparently I also have low vit. D. anyone else had this ? she said I needed more sun but wouldn't prescribe me a sunshine holiday on the NHS when I asked her so have to have tablets instead. Me too. My dietitian said that one of the best sources of Vit D is fortified breakfast cereals. So I have Rice Krispies (or rather the Tesco own brand version). 30 minutes of sun per week on your arms would also do it, says my GP, except that most of us are also on drugs that make us sun-sensitive. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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shame it looks like rain here paul or I could lie in the garden with my rice crisis
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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crispies !!  although it may be a crisis I probably wouldn't be able to get up !!
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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low vitamin D is quite common with RA, as the drugs don't allow us to sit in the sun for long.
i sit out in the sun with the umbrella up, but pop out for short 5 minute bursts, as i've got older i can't take much sun anyway .. but being out and about also helps without actually sunbathing, and always use high factor.
are you meds being changed?
Suzanne
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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got to have DAS repeated in a month and then they will try to get me onto biologics , they are talking about Cimzia..
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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ohhh right Julie,
yes Cimzia was mentioned to me when i was going to start on Biologics, i think there was a price war going on for them then, can't remember exact details.
then Consultant said no she wants to put me forward for Humira .. and the rest is history.
good luck,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Oh dear I think I'm a rare bird here!!! I have one of the highest Vit D score that was ever seen in rheumatology!!!! When the sun's out so am I. I sunbath every chance I get - just love it Good luck Julie with the DAS28 score and the hopefully new treatment. Your DAS28 score is relatively high so clearly your present drug regime isn't working for you. Gogs
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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Hi Gogs mine was spectacularly low I'm told , I love the sun too , always said it was an accident I was born here , I am keeping my fingers crossed they will consider me for biologics , as you say , my present drugs are doing b***** all ! sounds like you are trying to be a bit more positive , good luck with your photography and exercise regime !! I am looking forward to being able to get back to doing the things I enjoy , feels a long way off at the moment x
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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Hi everyone , so , 2nd DAS scoring yesterday and surprise , surprise , still high. good news ( I think ! ) , I am to start cimzia  , any experiences or tips welcome , nurse seems to think will be sorted ready to start in a couple of weeks , although reading previous posts not over confident that healthcare at home get things done that quick , fingers crossed though. scary adding yet another drug into the mix .
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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julie_warwick wrote:Hi everyone , so , 2nd DAS scoring yesterday and surprise , surprise , still high. good news ( I think ! ) , I am to start cimzia , any experiences or tips welcome , nurse seems to think will be sorted ready to start in a couple of weeks , although reading previous posts not over confident that healthcare at home get things done that quick , fingers crossed though. scary adding yet another drug into the mix . Hi Julie, It's not often we cheer at the prospect of being given more drugs, but as we all know when RA bites you are glad of anything. So, good luck to you, hope everything starts up soon. Gogs
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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thanks gogs , if it would help I would dance naked round the garden !!
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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julie_warwick wrote:thanks gogs , if it would help I would dance naked round the garden !! That's pushing it Julie unless it is that the morning dew is beneficial - then every person with RA will be out there every morning - what sight  Gogs 
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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at least early morning no chance of sunburn,go girl,dorothy
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Rank: Advanced Member Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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ha ha , I would do it if it helped , that'd lower the house prices round here , not a pretty sight ! x
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Rank: Advanced Member Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Good morning Julie, the early birds are up!! Gogs
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