So reading the report on NRAS site re your das score. So how many of you know your score and how many work to getting your score lower by working with your HCP team.
Then if not doing is it because you feel it does not work or no relation to your health.
If I have read it correctly feet are not included which seems odd as a big partof health in RA.
Just looking for brief yes not cant be bothered, so I can see if a big thing to do. Or have I miseed the point completely!
Was it this article you read?
Feet etc are indeed omitted. I wrote and asked my Rheumatologist a couple of years ago as reports of reviews always omitted the terribly painful feet and ankles even though I’d had two nasty falls (one fracture) due to the swelling and pain.
And a DAS28 score does not measure what active disease might be up to in organs eg heart and lungs.
I had to have DAS28 assessment to get biologic recently.
Sorry, not a simple yes/no!
Obliged for the link. 
Several reasons why feet are not included, mainly as hard to assess whether swollen on not as presents differently. Used to be a DAS44 that included feet, but research showed made no difference to treatment pathway so better to use something simpler that had more chance of being done regularly.
DAS is just a way of trying to have a quick, standard approach to treatment decisions. It doesn’t replace all other checks a rheumy should be doing, or GP.
And yes, my first rheumy used DAS and treat to target. And because I’m a nerd I always ask now as otherwise rheumy does it - but doesn’t tell me the score!
Your question got me thinking today thanks! Decided to check my folder of 'RA stuff' 😬 in January mine was 3.37 moderate activity and in May 3.1 low activity. I will be interested to see if it was done when I saw the consultant in July because she didn't even examine me (I usually get a copy of the letter sent to my GP) she just changed my meds. and seemed in a rush 😒
Saw podiatrist at Rheumatology dept today who said DAS44 takes much longer since 44 joints to assess including feet so quicker appointments if only 28 joints to consider! Podiatrists are not happy that feet are rarely looked at by Rheumys and are trying to get that changed.
Yes I keep a close eye on my scores. It was 8.2 (!!!) in April and hoping to see a significant reduction when I’m reassessed by Consultant next week since starting Truxima . And I’m going to show him my feet whether he asks to see them or not! Note to self, wear cropped trousers and sandals for the consultation.
Yup, walk in. Sit down. Take off shoes and directly ask doc to look at your feet. Make it hard for them to say no!
I got mine to do that after falls. It should not need two injuries with visits to A&E and an emergency dental appointment before feet are assessed. She did ultrasound scans on ankles; synovitis ie active RA. But not bothered with feet since. That was about 18 months ago.
I just concentrate on every step I take, whether the surface is even or not.
I did that at the urinology clinic and security escorted me out. 
Wow 8.2 😯 makes my 3.2 seem piffling! but still at times it's painful and my feet are the worst thing.
According to the ACR (shouldn't be any different from the BSR) the DAS 28 takes 3 to 5 mins & the DAS 44 5 to 8 mins, that is if ESR is up to date, allow another hour if blood is taken at the time. So, taking the longest time it's only another 3 mins!
I guess 3 mins of NHS nurse plus the extra training is worth it to some accountant somewhere...
Yes probably trying to squeeze in more patients as it seems departments are struggling to cope with demand.
Yes I always ask for mine to put in my book at the appointment (yesterday as it happens). I am down to 2.03 my lowest being 1.68 but we are easing MTX down from 15mg to 12.5mg per week as am doing well and the score was after a 3 week break from meds - fingers crossed that it’s a wise move!!!
Hi Deeb,
My initial DAS score was 6.32 and the way I felt I thought it was out of 7! My last score that I was given (6 months later) was 5.52. When I saw the Rheumy earlier this month I was on Prednisone so she didn’t assess me but changed my prescription from 20mg MTX tablets to 20mg injection. I would love to work to get it down but I just get the medicine and that’s that. Although I complained about my feet and she is fixing up an appointment with a Podiatrist. Have you been given any exercises to do? When I told my Rheumy I went to the gym but was worried about damaging joints she just said “Don’t overdo it” but couldn’t say what I could do. I think I’m quite lucky at the moment as the pain is only 2-3 and I can do quite a lot although the wrists can’t. I’m still working (part time) and it helps seeing my colleagues who have been really supportive. RA is what it is and I’m still getting used to what I can’t do.
Sorry, it’s not really brief is it!
Thanks Dspooky01 not htis was great thanks as i am at 5-6 I think based on me doing it and still working but I know its hard right now but I like to be able to track things to give me some sense of order in this crazy world. Once I can get body a bit calmer back to simming for me.
I hate this DAS reading . It’s irrelevant I could have every joint sore and swollen for months then I have an appointment on a good day and my score is good. This not including your feet???? First question I was asked by rheumatologist was my feet stiff in the morning and had my gait changed???? If your feet don’t count then why ask.
Sorry in a bad mood about to go on holiday and have just got a flare can barely walk with the stiffness in my feet.
Oh bless J1707 try to have a good time and different air and different head space even if you still have to take the same darn body x
I hope you do get to enjoy your hols J. Have you thought perhaps of asking for wheelchair assistance at the airport? The departure gates can be a long way from airport lounges with rubbish feet.
I did but didn’t want to give in 🙄
Rubbish feet...what a delightfully charming turn of words.
I'll add that to my non-profanity description list. Lol.
"Barperson, would you be so kind as to convey my beverage hither, as my rubbish feet, rubbish hands and rubbish body are inequal to the the task?"
I have never had my DAS checked in 32 years and 4 rheumys.
They haven't been checked, or, like me, you haven't asked?
I wasn't even aware of DAS, until I happened on this post.
Oh I asked, I even took the NRAS DAS booklet with me for her to sign. She just gave me a unny look!
Take a ball of wool and a knitting needle to your next appt and keep stabbing the needle into the wool, as you fix her with a steely glare, while making your request.
Alternatively, explain it's your body that's under constant attack and you'd like a progress report, as it's of particular interest to you.
Brilliant idea! Anyone game enough to try it? 😉
My Rheumy/SpR does my DAS 28 at each review & tells me my score, includes it in my report to my GP too. You're correct, the 28 joint DAS doesn't include the feet nor the toes, ankles, hips, neck, jaw et al. It's a simplified version of the original DAS (a 44 joint count).
I used to have the DAS 44 performed when I lived in Spain which of course included all of the above. It made a big difference to me treatment-wise as my feet & ankles are a good indication of how I am disease activity-wise, they were my first joints to be affected by RD & basically what I was diagnosed from. Nowadays, having ignored them for a couple of years (standard response, it's difficult to determine if they're affected by RD or if it's general use) my Rheumy indeed examines my feet, though of course they're not included in the DAS 28 score. Although I'm pleased they are acknowledged as a good indication of how well controlled I am (or not) & meds/doses amended accordingly they will never become part of the total score. This is worrying as it may mean the difference between me being put forward for biologics or not, though hopefully she'd consider me coming off my meds in order to see if I qualify even though it could mean weeks or indeed months of pain to accomplish the >5.1 taken on two occasions.
Of course this forms only part of the jigsaw, there's no gold standard for determining how well controlled or not a patient is so lots depends on being honest with how things have been/are & your Rheumy listening & acting appropriately with your med protocol!
Doesn’t include legs or feet! Complete waste of time !!
HI All
this has been great to read and helps me on what to think of when I see rheumy!
I asked for my score to be undertaken for the first time 3 appointments ago and at the 2 appointments since. Highest has been 5.7, but my ankles and feet are worse than other joints (and where it all started). My rheumatologist did note that although my score was 5.7, my ankles were very swollen and tender too.
A score of 5.1 or above is the threshold for biologic treatment,so possibly many people have had it done without knowing.
thanks Mmrr
The nurses felt my joints and did a score at diagnosis and a few times when starting meds to see how the meds were working. Then I had it done when in flare (5.8) but other than that it seems to not really be a part of the consultations. The consultant has never inspected my joints.
Appaz feet dont count as thats a different kind of RA (psoratic ?) but the treatment is the same (?)
It's short sighted though don't you think? Checking the health of the feet takes so little extra time out of an appointment I really do think the DAS should be increased to include the feet, toes & ankles. As it is now the hands, knuckles & wrists are checked... it's the same but at the other end of the body after all!
According to the NRAS around 90% of people with RD report problems with their feet. For around 20% the first signs & symptoms of RD are in the foot & ankle joints, I'm one of them, I only had erosions in my feet when diagnosed, very little in other joints incuding the hands, the usual joints thought to be affected initially. Not singling you out Thingybob, it's just a pet hate of mine, it's not just PsA (? too, I'm not sure either!), RD affects the feet too, they're not exclusive! 😔😌
I agree surely the time it takes its worth it as I know my ankles feet etc need a look at too!
They do examine your feet (they did mine) but it's not part of the score.
Yea, I know. See my original reply further up the page. Thing is for me, it took 2 years of complaining before my Rheumy would examine them, giving that they're not included in the DAS28 as a reason. I've mentioned this here before but it was only when I had nothing other to report she did examine them & was very apologetic when she'd finished her examination. She fast tracked an appointment to podiatry who confirmed lots of issues. I'm seen on a regular basis, I just make an appointment when I need things doing. We have 26 bones in each foot, plus the ankles & synovial membranes that surround the joints, they can't be dismissed!
I will push the feet!
Do, they are still a part of our body that can be affected no matter what those who condensed the DAS think!
Don't let them fob you off.
Put your foot down, Deeb!
C'mon, it would have been criminal not to grab a cheap laugh!
I couldnt agree more! I had hands , feet, knees, ankles and feet all affected. I dosen't make sense not to include them but who are we to question the experts (!!!) 🤔
What is a DAS score? Is this similar to the RF, rheumatoid factor number?
No, it's not like your RF. It's a scoring system to assess the current state of your RD. It's calculated using a formula that includes counts for tender and swollen joints, an evaluation of general health by you (your Rheumy asks you to do this on a piece of paper usually ((VAS or Visual Analogue Score)) on a scale of 0 to 100 or 0 to 10, it seems to vary according to area) & your inflammatory marker (ESR). Your Rheumy uses a programmed calculator to determine scores as below:
>5.1 - high disease activity
between 5.1 & 3.2 moderate disease activity
< 3.2 - low disease activity
< 2.6 - remission
The joints included in the DAS 28 are shown here 4s-dawn.com//DAS28/
Thanks for the link.
Had a look and have to say my hands are bad, but not as bad as the drawing.
Now THAT is a bad case!
What?
Haha! Each time I see it the thought that goes through my mind is it would be great to have those hands for scooping up the fallen leaves from our two apple trees!
Sadly, I didn't get much done last Autumn and this spring, so the three (communal) gardens have put on a sparse show.
Just coming out of a flare at the moment and, bopefully, will redress the imbalance starting this weekend.
I've missed that gardening 'feeling' and I've felt the loss.
Listen to me, going all Capabilty! Lol.
WUT?
It all went over my head Deeb and I mean ALL!
I haven't a Scooby what means what and I've started to realise I really should be paying more attention in class, so, with that in mind, I purchased a foolscap pad yesterday with the intention of swotting up on all this stuff and, lo and behold, stumbled across this post, which has served to further highlighted the depths of my utter ignorance.
Now all I have to do is wait for my sausage fingers to unswell, so I can start taking notes and maybe ask my rheumy some intelligent questions at my next appt.
He may be delighted at my newly found enthusiasm or Royally peed off (I suspect the latter), as I've only ever said "Nope, NOPE, not trying that!" or "It's not going to make me fart like that last stuff, is it?"
I've decided, after about (Times it by seven, subtract nine, divide by a hair past a freckle...) many years that I'm going to really get into this malarky.
Seems only reasonable to study what's going to bring about my demise, so thanks for bringing up the subject!
I'd better start looking at the responses you've drawn...
I love your feedback and helped me smile this morning on a bad wake up so even better and a smile is not included in a DAS score so that might be a plus!
The more I read the more I get confused then enlightened but got a lovely list of questions for my first cnsult next week!
I'm being genuine in saying I just wasn't bothered, until this recent flare.
Not denial, by a long chalk, but more insouciant.
My view was, ask what side effects this has compared to that, how long before it becomes effective, will it limit me doing this or that and other such mundane issues.
My flare has come about following my rejecting further use of Ssz for the third time, a few weeks back.
It doesn't do the job anymore and the nausea has too detrimental an effect.
Emoprazole, which dealt with the nausea, caused me kidney probs, so that's out, too.
Smh.
Once the flare began I decided that, when it was starting to ease up a bit, it was time to look more in-depth, start taking notes, find a pattern for my own personal case, but mark the pros and cons others have experienced with treatments for at least a general benchmark, so I have an idea where a tweak in either direction might produce a result that suits my own case.
This post made me realise that progression, balance or regression can be better identified, rather than a scan and me asking " Better, same or worse?" so your post really did appear at a perfectly opportune moment and I'm grateful.
Sorry you had a smelly morning and hope things have improved.
I phoned my GP this morning and asked him to contact my Rheumy, as they've both been trying to cajole me into giving MTX a go for over two years now.
Prior to the appt I'll do the same as you and start compiling my big-list-of-vitally-important-and-necessary-to-greater-understanding questions.
Have a restful evening.
bless you DEMBONES virtual hug IF I could do it! Arms and hands in a muscles stuck to bones kind of day. So being good and chilling and for me not being bored a miracle as just zoning in and out of my world today x
Got your message fairly late and hope them muscles unstuck and the kinks ironed out.
You, like me, feel at a loss with nothing to do, I can tell. Lol.
Also, like I did, you'll eventually come to accept knocking your pan out for a day takes two, three or more days to recover, so, even though it gets hard to plan ahead with this disease, it's better to pace yourself on bad days, not so bad days, good days and great days and that way you won't feel so guilty about the things you haven't achieved.
You have my sincerest wishes that you get the right treatment that balances your condition as soon as possible.
You're getting there, there's no doubt of that, but you need to fine tune between resting and restlessness.
Being a hypocrite, like I is, lol, I pushed myself a wee bit, earlier this evening, as the weather wasn't bad.
Mile to the shop, mile back, laden with two bags.
Just under an hour on the outward trip.
Nearly three on the way back.
Eight, maybe ten steps, rest, steps, rest...
One young couple were about to phone an ambulance.
My rests tend to alarm some folk, as, weather permitting, I just sit on the pavement.
My life, my rules.
A tin of chickpeas had rolled out of one of the bags, that had fallen on it's side and they, having turned the corner, assumed I'd had a fall.
Had to produce my wallet, in order to convince them I actually HAD the cash to get a taxi, had I chosen and that this adventure had been entirely voluntary.
There's a lot of good kids about that aren't self absorbed.
I guess I'm lucky I meet a lot of them.
A neighbour carried my shopping up to my flat, as he won't allow me to stand on false pride.
We sat down after every flight and had a gas.
Some light tasks achievedduring the day, an adventure, then home.
It's been a good day.
I wish you a few of those.
dembonesDAMNBONES always people there who want to help I just think as a society we have become too anxious at saying yes in case something goes wrong.....though hubby tends to be my pessimist to my optimist approach.
My only problems with accepting help was anger at my body for betraying me, not wanting pity or to be viewed as an invalid and not wanting to put folk out, being determined to struggle on, as long as I could, until things were beyond me.
Falls, in the past, have seen me take as much as fifteen minutes to clamber up from, but that just isn't practical, in a busy city centre, so I'll accept help inquestioningly, if I'm flaring, warning whoever is helping that I'm liable to yell in pain, but to ignore me, unless I say stop. Lol.
My ex (a narcissist) was an unsympathetic bi...individual, which made it easy for me to refuse help, as she only offered in public, so folk wouldn't berate her for being callous.
I never even notified DWP, when I was first diagnosed with the RA.
Pride...basically didn't want bugger all from the govt, didn't want folk thinking I was a cripple or worse...a sponger!
Nowadays, I weigh things up.
A to B, how long, how many rest stops in between, how much will it take out of me, how long to recover, how much help will I need, do I need to do it right this minute, today, this week?
I'm upgrading from being an optimist to becoming a realistic optimist.
Live Christmas NRAS show
PERHAPS THE NRAS CAN ADVISE
it's a 'bear tRAil 4 NRAS' - Fundraising for NRAS 10th Birthday
What is NRAS?
Painful Feet and ankles not included on the Das28 score?
