One of NRAS's goals is to help people to understand a... - NRAS
One of NRAS's goals is to help people to understand and monitor their disease better. Do you feel that the monitoring of your Disease Activity Score (DAS 28) has been helpful in your RA management?
164 Voters
Its too easy for the medics to ignore what the patient says and just listen to the scores. I was once nearly taken off an ant tnf which was working well because I misunderstood the basis of the question and answered on the basis of how I felt compared to before I was ill. Five years later Im still on same meds but only because I went to see senior consultant privately. The dr who wNted me off the anti tnf didn't look at me and was only interested in his scores
The DAS score helped me because I was bad enough in the relevant joints to go on anti TNF But it doesn't take into account the feet I'd been hobbling around right from the start.
I know my consultant and nurses use DAS scores because they do all the appropriate tests (ie couting the saw and swollen joints, using the sliding scale 1-10 of well being, CRP levels etc.) but they never share it, so I don't know how much they use it in the management of my RA.
I've never been given one but was only diagnosed in November and didn't like to appear too much of a know it all by asking. Now my rheumy appt seems to have been postponed for a while so I guess I might not get to find out?
I have never understood why DAS doesn't include feet. My feet are the worst affected part of my body but this isn't reflected in my DAS score.
ive never had a DAS done but as the same as you my feet are really painful my left foot is completely damaged as ive been in pain for yrs but just recently diagnosed with RA if only doctors had sent me for tests earlier as RA runs in family women side everyday is a nightmare walking now starting on fingers im just praying MTX is going to relief some pain
I've never heard of a DAS. Is this something that applies only to people in the United Kingdom? I admit to not reading much of what is on HealthUnlocked because it doesn't apply to me in the US. Sorry.
I have my DAS score done every 6 months now (was every 4 until GPs got funding) and because the first consultant that ever did it explained the target figures and how they arrive at them it is a helpful marker. I do have to admit to every slight pain in a joint when they touch it , though, otherwise it's very inaccurate.
I have never been told my DAS and don't know whether it is taken or not. After having appointments every 3 months, I now get to go about every 4 weeks with the treatment nurse. I know what my bloods are as I have a record book, but this is only part of the picture. I think it would help to be more involved as RA is so overwhelming.
Never heard of this! Is this the same as the esr rating? I was on anti tnf,got cancer, now on rituximab. WHY don't I know about this?????
Having had RA for 36 years, the only time I has a DAS score was earlier this year - to go onto anti TNF drugs. ?
Like most tests, DAS is a benchmark test that has it's limitations. Someone, who probably didn't have RA, had to decide which factors to take into account. Presumably because everyday life is more difficult if one can't use hands and arms, those were the joints on which the test concentrates. I find it astonishing that some health professionals still don't explain in detail what the test is used for and what the results mean. A few months ago I went to London as a "patient" for a DAS training program for health professionals. Most nurses acknowledged the importance of the communication between them and the patient, so progress is being made!
Thank you very much for all of your comments. If you would like to find out more about DAS please follow the link below to our short video on DAS, and to download our 'Know your DAS' booklet, a patient guide to understanding disease activity score:
nras.org.uk/about_rheumatoi...
Kind regards
Sarah Kate
NRAS Helpline
I took the booklet about DAS to my consultant about 4 years ago but she wasnt interested, just looked and grunted and went on with my appointment. I thought perhaps it was just a "silly" thing that patients did for themselves and from her reaction I surmised it wasnt really useful. Have a new consultant now and seeing her in April so may ask about it. She may have a different view!
I have never had a DAS report. I never see my blood reports they just say they are OK or not, I have had RA for some 15 years and when I see the doctor they just ask how I am, say I am doing well and I leave. It may be my fault but if I feel the same what can I ask to improve my life, this is it.
I have never had one either !
I had one done last Friday- in fact I have had three, I was diagnosed last June she did the test on my first consultation, then in November, and again last Friday- my next appoint is May she is going to review me then.
I had ultra sound scans on my hands, X-Rays on hands and feet,breathing test, chest x-rays. I thought this was the norm.
DAS is taken every time I see my consultant (& everybody in the waiting area is usually pondering over a clipboard for DAS purposes also. It appears to be a simple & effective way of assessing physical function but it takes no account of more subtle issues such as fatigue, mood or 'energy'. Perhaps there could be a complementary assessment re the affective consequenses of living with RA which could be completed at the same time as the DAS. I believe that this would provide a more realistic measurement of the impact of the disease.
Since being diagnosed a year ago I have had 5 DAS scores, my consultant gave me the first of 7.6 and told me we were aiming to get to 2.6, been given this goal at the start really helped me remain positive throughout.(we reached 1.35!)
Having looked at the nras.org.uk/about_rheumatoi... page recommended above there is a DAS booklet for the professional also which i took a look at, it explains to a consultant how to take a DAS score. I know for a fact my consultant has never read this!! The last time i saw her she squeezed my fingers and shoulders and knees and said well you've got enough points!! and when i asked her to write it in my DAS book she was pretty cross and said well i'll do it this time but if i fill everything in every time i will be very late doing my clinic!!! This booklet for the consultants explains to them how to feel for our joints and check the differences in temperature etc. my DAS score would be very different if she did it properly so why arent consultants doing it? By the sound of most people on here it not being done.
I have been treated for the last 4 years for arthritis but I have never heard of the DAS 28 just getting told how my condition 'confuses' my Rheumatologist & how I 'tick certain boxes on several conditions so no definative diagnosis'!!!
Maybe my autopsy will reveal the secret when the inevitable time comes?
Didn't help me, I don't swell in the required places ???????????
The problem I have with DAS is that below a certain score - I think 2 - technically you are in remission so my consultant says. I have scored 2 before but still had pain and swelling. So it's not really remission is it? To me remission is when the condition is not painful and there is no swelling or stiffness. So I'm not sure who decided that 2 was remission.
Wow!! Seeing the results off this I cant beleive so many people dont even know there DAS score!!
I make sure I keep up to date with my DAS score and my ESR and CRP readings as often as they are checked, I know myself roughly what they are going to be before having the tests and always tell whoever is going in with me before I go in/ or have bloods as a little test for myself and Im normally right,
Doctors / rheumatologists should all learn there patients more about there DAS / blood results etc as a helping hand in there treatment.
I too dont understand why only the DAS 28 score is used / especially in people like myself who suffer so badly with there feet!!
As i asked below, Can you please inform me of what all these things are to keep track of, I was diagnoses 21 years ago with RA only began treatment past 6 months, MTX 2 weeks, and also Diagnosed with Fibro, I also have Peripheral Neuropaathy
Thanks Lisa
I have never had one done since I was diagnosed last July, I'm going to ask hime when I see him in May, since I was first diagnosed the bases of my thumbs have been like rock hard puddings, and though they never get red they often swell more and get so painful that I can't grip or do the twisting action needed to unscrew tops or open cans, a big nuisance!
My DAS score is 10. Is that good or bad ?
well I wish i knew what this score was, as i said in blogs and questions, I am new to this site, and in treating my RA and Fibro, can someone please fill me in, Please
Thanks Lisa
ive never even heard of it
I have just had a look at the video, i have not had DAS test either. I did have examination when I was first diagnosed just over a year ago, but nothing as intense as in the video. I have been given 6 monthly routine check appointments at hospital, and I have bloods taken every month at my GP surgery. Hospital said if i need to go see them anytime to ring and make an appointment. Just recently had 6 month check up and now referred to hand therapy, OT and podiatrist, does this mean i will be having more frequent appointments are are these usually one off appointments? I'm not sure as not had this before.
I say NO to this question because although I do have regular Das scores at each app at Rheumatology my feet are never looked at or Das tested. I do have stiffness and pain in hands and other joints, but my feet and ankles are the most painful and difficult to stand/walk on. My Das score is usually between 5-6, but I believe this is not a true figure. Why are feet excluded from Das 28 scoring ?
Sad to say ivd never heard of it!
