on my blog post 'Hopeful' Clucky from NRAS recommended that next time I see my Rheumy I ask what my DAS is and referred me to the information on DAS on the NRAS website. I've had a look at that & it's raised a few questions.
The CEO of NRAS says at the beginning of the info. vid on DAS that NICE guidelines now recommend that those newly diagnosed with RA should be monitored monthly in order to assess whether their treatment is working. Has anyone here been monitored on a monthly basis?
The focus on RA begs the question of whether those of us who are diagnosed with other forms of inflammatory arthritis, or like me, simply with 'sero-negative inflammatory arthritis', should also be monitored on a monthly basis according to the NICE guidelines and, of course, whether DAS applies only or predominantly to RA.
The DAS examination process is shown in the video and does not resemble any examination I've been given. In the 2 Rheumy consultations I've had so far the physical examination was nowhere near as rigorous.
I know that the DAS is much criticised and I'm beginning to understand why.
Even if I were to have the physical examination shown, I doubt very much that it would reflect what is happening to my body. My knees would be DAS stars - swollen, hot, bingo! Other joints complain constantly but are not very swollen and are not tender to the touch. For example my right little finger hurts when it rests on a hard surface so writing is difficult, but for some reason manipulation or pressing doesn't hurt. It would seem that DAS doesn't kick in until joints are very obviously in big trouble; too late, potentially, to prevent damage. I have a lot of pain in my feet, too, but they don't count for DAS purposes. Why not?
I think that I could easily end up needing to use a wheelchair without ever having had a shot at Biologics if DAS is the main criteria for prescribing them.
The DAS examination seems to rely purely on a physical examination, ESR and the patient's own assessment of their condition. I can't help wondering how much weight is really given to patient input. I know enough about other peoples' experiences of inflammatory arthritis to know that not everyone has raised ESR when they feel that their disease is at its most active, nor do they necessarily have visible or pronounced swelling.
There seem to be 2 very noticeable omissions from the DAS process: the Rheumy's clinical judgement and technical input from x-rays or MRI etc.
I'm in two minds here! On the one hand I agree with Clucky, good idea to try to find out what my DAS score is, if only to get a thorough examination, perhaps. On the other hand, I'm pretty sure it would show that I'm not too bad at all, thanks very much which, sadly, is rubbish.
Look forward to hearing what people think or know about DAS, I expect I've over-simplified or got some things wrong, too.
Christina xx
PS while I was writing this my OH was inspired to actually have a look at the NICE guidelines which is the next thing I need to do. He reckons they specify that someone like me should be on at least one other drug in addition to MTX. Are the NICE guidelines worth the paper they are written on or are they, to use an annoying business buzzword, 'aspirational'?
OOooohhh don't get me started...Red, bull and rag come to mind. Not sure I've ever heard of anyone get monthly DAS monitoring, but maybe there's some private patient somewhere who does. Anyway unless you're in the running for biologics it's a bit meaningless, and really is just another thing to show trend of changes over time rather than real diagnostic tool. I'm one of the people with an ESR that rarely budges, so my DAS rarely gets over moderate activity no matter what I'm feeling like which annoys me hugely as on the few times the hospital has done it, they've then said I'm doing fine. There's a nifty DAS iPad app that you can play with, plus a website that allows you to do the same. Hours of entertainment. Be interesting if anyone has a positive view of DAS, as I don't. Pollyx
(and guidelines are just that, guidelines, so individual rheumy's can use their own clinical judgement too which I do think is right, except when it comes to rationing of drugs where they can't. But if you want a side splitting laugh, look at some of the medical maps that set out what all the different stages of your treatment should be.... maybe if the queen had RA her docs would follow it, but otherwise it is but a dream)
yes it does seem that the guidelines are aptly named. However, I'm sure they were very expensive to dream up & we pay for them.
I've been searching in vain for the equivalent to DAS for PsA. Looks as if there are proposals for such a thing, but nothing more.
I'm beginning to think that while the NICE guidelines are usually ignored for RA there don't even seem to be any for those whose diagnosis is inflammatory arthritis or PsA etc. I'm still searching at the moment.
I was not quite sure what you meant about Rheumys rationing drugs, which does seem to happen. Did you mean that it should not happen or that there are some strictures against it?
I think I did stumble across some of those medical maps. Maybe I'm turning into Mrs Trellis but the waste of both human labour and money makes me furious. I might see the funny side after a bottle of wine, definitely after two bottles, but that's not going to happen just now!
I think the DAS is useful to me at least in one tiny respect - it is so completely un-me that it strengthens my view that I don't have RA. But as you say, doesn't work for those who have been diagnosed with RA either.
You are right - DAS isn't really for other forms of arthritis, and there are different ways of measuring progress of those. PsA has its own disease monitoring scores (can't remember the name of it, but its referred to in the NICE guidelines for PsA and biologics), and other forms of spondylitis use the Bath Indices (BASDAI, BASMI, BASFI, etc).
But, you are also right, that in spite of clear guidelines, most folk actually don't get the full or recommended follow ups or monitoring or measuring - precisely because these are just "guidelines" and not "rules". The only case where they really do adhere to them is if you are being monitored for drug trials, or if its part of the requirement for access to expensive or new drugs.
More than just not getting this kind of monitoring, I worry about half-pie monitoring - eg with me, I haven't ever had full BASMI measurements, but I have had doctors "guessing" and approximately at measurements. It does give a false impression of what is going on, and isn't something you can compare one visit to the next, or one doctors assessment to the next - which is the whole reason that standardised measuring and monitoring was designed to start with.
However, if we want to be a bit proactive about it, a good strong and clear question to the rheumatologist might help - "how are you going to monitor me to ensure that you can see exactly what is changing over time".
I'll check the guidelines again earthwitch - my OH was looking for them but gave up & went off to have a bonfire instead.
I agree with you wholeheartedly about strong, clear questions but at the moment I'm more worried about what is going to be done to prevent further changes.
Christina xx
in reply to
Also, re. your BASMI measurements, it's just dismal, isn't it? There has got to be some continuity from one appointment to the next. Are follow up letters the only record available to us or can we access more detailed records, inaccurate as they might be?
And re Biologics, if the criteria are used to aid access to expensive drugs, I'm wondering how I'd ever get access seeing as I don't have a specific diagnosis with its own disease monitoring scores. Hum ho! Can't stop digging now!
I have just looked and it's PsAArc, thanks for the info, it made quite interesting reading!
Well if the three of you managed a rheumatology centre together the area would definitely be a hotspot for this specialism par excellence! I think the wrong people have got the NHS jobs entirely. As you may recall I was forced to write to our medical director - the orthapedic surgeon here - about the fact that I had been put on MTX with a vague diagnosis of RA and then not been seen or contacted by anyone other than my GP for over 8 months. My GP pointed out that while it may be my surgery's job to monitor the MTX for safety they are not qualified to monitor me for disease activity.
I've never been given a scan or MRI nor has my DAS ever been mentioned so it's not really on my radar? My rheumy did tell the GP that he thought my RA was still active but on what basis I don't know. I asked the GP if it was based on my consistently high ESR and GP said no that hadn't been mentioned - it would be from my description of current symptoms so on clinical grounds? But my symptoms are vague and I'm vague and as this is communicated via GP its going to be third hand and I think rather unreliable.
Basically I think that if we sign up to DMARDs as advised then we should be monitored monthly for whether these powerful and potentially toxic drugs are actually making a difference. That's the bit I feel most strongly about and DAS scores don't seem relevant to this assessment except in England re Biologics possibly?
Tilda xxx
in reply to
I'm sure most people would agree with you that monthly monitoring of newly diagnosed people is the most desirable of these almost completely ignored and neglected guidelines. Your 8 month gap between Rheumy appointments was appalling.
The DAS and the other disease monitoring criteria do seem to be dead important for access to biologics in England (I know you've explained how Scotland is different before but I can't remember now.) I've been looking at the PsARC criteria that are used as the entrance exam for biologics for PsA (it's a bit complicated, I think there might be other criteria as well) & seems to me I should qualify. Trouble is, no diagnosis of PsA. Vague diagnoses are starting to seem quite problematic, potentially.
Prob with das is that they're treated as objective but are actually subjective measures. It depends on how you say you're hurting. I was nearly taken off treatment that was working because I gave the wrong answers.
Why don't they just ditch it, I wonder? I'm sure I'd try to give the answers that would get me what I felt I needed but if caught off guard I could go all stiff upper lip which presumably doesn't help. But wonder what the right answers are?
With regards to monitoring I was diagnosed last November and started on MTX. I have seen a consultant once since then and also a registrar once. I was supposed to have a follow up appt in august, the appt letter arrived with Sept 27th ( this week ) then it was cancelled and re-arranged for Dec 27th and now this has been cancelled until Mar 2013. If this goes ahead ( IF! ) Then it will almost a year from one appt to the next!!!
I did get one appointment brought forward via my GPs intervention, but only by a few weeks. I recently phoned the Rheumy nurse at the hospital & she promised to try to get my next appointment brought forward, too. She said she didn't hold out much hope but seemed very happy to try. Unless you are feeling fit as a flea this seems totally ludicrous.
I am going to ring the helpline number tomorrow because i am having some pain in my hips which i'm not happy with plus a general increase in aches, numbness and pins and needles in various joints. Hopefully i will get to see someone. I'm not fussy as long as i see someone!
At least you have a helpline you can call Treesha and perhaps your GP would also be a good port of call to hassle on your behalf for an earlier appointment. Quote NICE guidelines at all these people (but try sounding tearful and sweet first!) Tilda x
I also have 'sero-negative inflammatory arthritis'and a normal ESR, but I have fat fingers and elbows so I have a high DAS score and therefore I am on Humria because nothing else I was given reduced the swelling so DAS should also apply to you as well. I have to try four different drugs first though and fail each of them before they did my score. I now have to go back every six months to check that my score is low enough for me to be allowed to continue with the Humria, other wise they will take me off it and then I don't know what will happen.
That's interesting Ozzy. Not the most welcome news though as the DAS thing seems harder for me to 'pass' than the PsARC criteria for PsA. (And my money is on me having PsA at the moment.)
I sustained permanent damage to knees ridiculously quickly so seriously have not got time for 4 DMARDs. Has anyone? I thought the NICE guidelines specify 2? There again, the NICE guidelines don't seem to serve any useful purpose.
Sounds like Humira works for you, glad to hear that. Though living in fear of being taken off it is dreadful. Hope you continue to do well on it.
I think there is a huge postcode lottery to this whole DAS/ appointments business Christina. I'm not surprised that I had the 8 month wait and am hoping that my letter to the medical director and all the ensuing fuss will mean my consultant will see me again when he is here again in November. But nothing is certain as I've learned and it could very possibly be March - although he did say "I will see you in November next time I'm up here" - but then he said that last time and it never worked out. But if flights are cancelled because of bad weather or anything then he may not get here and they don't postpone clinics in this event as far as I can see. I daren't mention DAS to him because just seeing him is such a privilege that there really isn't time for anything beyond being examined and forming a plan. I think DAS is like one of these co-alition terms such as "Big Society" - it means b***er all for most of us! Tilda x
PS I mean I'm not surprised because of my remote location. It doesn't make it right but it is more understandable at least.
Some interesting and understandable comments about DAS. First of all it is a measure used in RA but that would include people like me who are sero-negative. As as been pointed out by someone else, if you have PsA or AS there are different disease activity scores which are used. DAS is not a perfect measure by any means, but it's the best we have currently and it's used widely, internationally, and in clinical trials and it is one of the 'core data set' used in all clinical trials. It was originally a measure which included many more than 28 swollen and tender joints in the count and because clincians felt that this would be impossible to do on a regular basis the count was reduced to 28 and it was felt and I believe shown through use that this gave a reasonably accurate measure together with the patient global and ESR or CRP of disease activity even though it did not include feet. I am not in any way defending the lack of feet inclusion as I agree, 90% of people with RA experience difficulties with their feet. Most health professionals I speak to about this tell me that they always apend details about foothealth when doing DAS scores but .....
In regard to the NICE Guideline CG79, I was part of the guideline development group who produced this guideline which we worked very hard on for 18 months. We went through a very rigorous evidence based process and we were very proud of the guideline we produced because it was a step change from 'usual' care where people are put on DMARDS and then not seen for 3-4 months during which time things may be getting worse if the drugs are not effective or if the person is experiencing difficulty with side effects. Combination therapy rather than monotherapy was also recommended and the health economist on the team was able to show that combination therapy was more cost effective than monotherapy in addition to being more effective. Yes to some degree at the time these guidelines were aspirational but not to stupid degree. We all agreed that the evidence showed from research trials that if you worked towards a target DAS agreed between newly diagnosed patient and their clinician, and were tightly monitored, ie monthly, where if the disease activity was not coming down you either increased the dosage or added another drug, you were more likely to achieve a low DAS or remission, that this was something that we should all be aiming for because it improved 'usual care' outcomes. Whilst the guidelines have not been implemented as rapidly as we at NRAS would like, we are working consistently with the British Society for Rheumatology to encourage implementation of treat to target strategies in line with the guidelines and there is no question that many teams around England and Wales are working towards this aim. Some are bringing patients back every 4-6 weeks now and so care is gradually improving but I appreciate that the variation in access to best care is still too great and again, this is something we are constantly working to address with policy makers, trusts and government.
I hope that this information is helpful and rest assured all of the issues you raise are things that we are working hard to improve upon.
Hopefully this discussion here is useful for you when it comes to keeping up the pressure for improvements! My second appointment was 10 weeks after the first and I thought I was really lucky because of the waiting times I routinely hear of on this site. So when I watched your video & heard about the monthly monitoring guideline I was astonished.
Don't know if this has happened already but, if not, would intervals between appointments for newly diagnosed people be a good subject for a poll?
I accept what you're saying, but I think that there's a huge difference between things that were thought of and produced a few years again, and which may have been starting to take effect, and the current situation in the new economic climate. The impression I get from reading people's experiences on HU is that the standard of care is dropping, not rising. Unless you have recent survey's that show the contrary then I think it is possibly complacent to assume that care is gradually improving? In many places it does seem that they are prioritising the newly diagnosed, which is good, but at the expense of those who have had RA for a while. And my sceptical self says that's about meeting targets as much as it is about the most effective treatment. My own experience is that I had great care for the first couple of months, but then it fell off a cliff and I'm lucky to get 5 minutes every 6 months, despite not yet being stable on my drug regime and having concerns over side effects and so on. So I'm not denying the good work that was done, but I do feel it is all being swept away at present. Polly
I agree with you, especially about the direction in which the standard of care is going. And I think that the current economic climate is in some ways a godsend to senior managers with budgets to trim. Just about every news story about the NHS before 2008 featured or mentioned cuts and I tend to think that whilst there might have been some growth areas in terms of funding, most were having to tighten their belts long before this depression. The term 'Difficult Economic Times' is now being used to announce & make cuts with greater impunity.
I think the point that Ailsa makes about some forms of expenditure being cost effective (combination therapy) is so true. But do healthcare trusts think that long-term or, rather, can they afford to?
Quality of provision probably is not all about money, I know. Sometimes the NHS system doesn't seem to encourage joined up thinking etc.
I agree with Tilda that it helps to get informed and fight our corner but realistically that's not everyone's cup of tea, it's not possible for everyone to take that approach. It's great when patients work together like we do here in so many ways but we are also probably competing for scarce resources whether we know it or not.
Christina xx
I do know that the NRAS helpline people were immensely helpful and supportive of me when I phoned and later emailed and explained my situation re complete lack of disease monitoring for me. I'm sure the fact that I received a letter of apology from our medical director for the way I had been treated was in part due to the feeling of empowerment that joining NRAS has given me on many fronts and I'm sure I'm not alone.
But as you say Ailsa in practice it seems to take a long time for things to filter down to the ground where most of us actually are. I think the most important step each of us can take is to gem up, research and generally know our stuff when we meet with our rheumy teams. Only by being proactive and at times persistent can many of us get additional DMARDs introduced to help us fight RA. And I haven't yet plucked up the courage to ask my consultant about my DAS - it's quite daunting revealing just how much time we spend on here and doing the research etc and asking about this has so far felt like a step too far? Tilda
Hello, I've had a DAS score every 3 months since diagnosis Feb 11; I feel it gives me an accurate indication on whats happening, I have read why the feet weren't included as mentioned by Aisla, just wanted to add, I like it, it's suits my pea size brain when it come to understanding disease activity and how succsesful the meds were.
When diagnosed my Consultant told me he was aiming to get my DAS score from 7.6 to 2.35, it gave me a goal not to mention hope that things would be better, DAS helped me understand expectations of getting RA under control.
It's been at 1.35 for several months now, maybe thats why I personally like it!
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