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Rank: Newbie
Groups: Registered
Joined: 3/23/2011
Posts: 3
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Dear All, 27.3.11@20.40I am Sean Ostrowski and have just been diagnosed with RA. I am with Dr. Hugh Jones at Kingston. I am trying to match my DAS 28 scores of 5.31 in February and 2.38 in March with my own calculations using the standard software. My queries are:- 1. Does tenderness mean to the touch? 2. Does swelling mean visible? 3. The weighting on the equation does not equal unity. Why? 4. What is the constant 'In' in equation for ESR = .70 x In(xxx)? 5. What is the value of the constant 'In'? I would be most grateful foe any assistance. Regards to all Sean MEM 00049379
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Sean, Welcome to the forum, we are a helpful friendly crowd and we have all been where you are at the moment. I am Lorna, I have had RA for just over 3 years. When I was initially diagnosed I was very severe with RA. Almost everyone of my joints were affected.... bar the knees. I ended up bedridden as I was unable to do much at all. But having been on the triple therapy, which is a combination of 3 drugs aimed at trying to hit RA head on. In my case it worked I keep so much better now as long as I do not over do things. To answer your 1st question I would imagine tenderness would relate to pain as in how bad it is at any given time. I remember myself being in so much pain, it started with tenderness and ended up agonising. To answer your 2nd question I would imagine swelling visible, There is no doubt about swelling being visible. I remember again myself being so swollen my hands did not bend and I had lost the use of my right arm and could no longer turn my head. I was swollen everywhere and bent over because of the hot swollen joints. As to the rest I am not sure what you mean. Take care Lorna 
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Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Hiya Sean , welcome to this friendly forum.. I myself , am not on anti tnf's nor is there any plan to at the moment ..hence my DAS 28 is not recorded , but instead a joint count and measurement on the Visual Analogue scale is used as routine ... Have a look at this article on this site with regard the DAS 28 score DAS28 ScoreHowever now i am being CC'ed into my Bloods then i might out of interest start recording DAS for my own interest and use an online calculator such as the one HERE rather than work it out by hand. Ultimately i will use how i feel over time as a guide for myself :) EDIT .. and i think ln is not a constant but natural logarithm if my memory of Maths serves me well :) Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sean Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us and NRAS! I'm Lyn, married to Mike, we have four children, Abby 23, Ian and Jake 17, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with sero-negative RA nearly 23 years ago (might now be sero-positive?!) and have since run the gamut of medication and had lots of surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, and a jolly assortment of pain killers! Struggling at the moment after 12 months of operations, joint injections and uncontrolled disease. But heyho... that's life with RA! I attended a DAS workshop on behalf of NRAS at the Liverpool BSR a few years ago. This provided much information on the history of DAS, the practicalities of actually doing a DAS and interpretation of results. Whilst there are DAS calculators available online, in my opinion, they are not to be recommended and the DAS should always be undertaken by a qualified practitioner such as a rheumatology nurse or a biologics nurse. The DAS used in rheumatology units is the DAS 28. This involves assessment of 28 joints in the hands (10 each), wrists (1 each), elbows (1 each), shoulders (1 each) and knees (1 each). Each joint is checked for tenderness and swelling (ie those showing signs of synovitis).The ESR and the VAS and a couple of factors arethrown in and out comes the DAS! However, the important part is the assessment of the actual joints … it’s not simply a case of this one’s swollen and this one’s painful! Each should be examined for the degree of synovial fluid present in the joint (there is a particular method for doing this), whether this is due to active RA or whether it is thickened synovium due to long term disease. I have a mixture of the two but without the knowledge of these diagnostic techniques I could very easily come up with an incorrect answer. Likewise the pain/tenderness assessment needs to be done by a qualified practitioner who can be totally objective. It shouldn’t be necessary for anyone to be doing their own DAS; it is there as an assessment for Rheumatologists to use in order to assess the efficacy of the chosen drug regime. It is not a suitable tool for day to day disease progression. Many of us ‘check’ our own blood results, ESR, CRP, WBC etc. to keep a watchful eye on things, but these too should be checked regularly by your practitioner during normal monitoring. Forget the DAS and leave it to those qualified to check it otherwise you run the risk of getting bogged down in incorrect information. Your results show a very significant improvement in your RA. Hope the symptoms match these results! DAS less than 2.6 ... .Disease remission 2.6 - 3.2 ... ... ... ... ... Low disease activity More than 3.2 ... ... .. May require change in treatment for some patients More than 5.1 ... .... ..Severe disease activity NRAS produce a very good booklet and DVD about DAS; worth asking to have these sent out to you. The calculator link Rich has provided is a good one but as I say what you regard as tender/swollen may not be an objective/correct view and the results could very easily become unreliable. Hope this helps a little  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hi Sean,
Welcome to the RA forum but sorry that you have RA. You will love this site for its knowledge
and friends. It is a horrid thing so to get support from people that really do understand how
you feel.
I am Rose aged 56 from Somerset and married with two grown up children and 1 Grand Daughter.
I was diagnosed late 2008 but unfortunately 4 dmards later still not sorted. Due to start Humira (TNF)
within the next week, I am waiting for 2nd round of antibiotics to finish.
Cannot add anymore than Lorna and Lynn, so just to say keep posting
Rose
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Rank: Newbie
Groups: Registered
Joined: 3/23/2011
Posts: 3
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Dear All, 28.4.11@20.05Nice to hear from you all and thanks for your input. Looks like it is quite a community. Do any of you know where I can get a clinical defintion of tenderness and swolleness as used in the DAS 28 tests? Do any of you know where I can get a mathematical proof of the DAS 28 equation? There is nothing on the NRAS website that provides this information and Googling it only comes up with the same DAS 28 calculator without providing the definitions that are being assessed or the proof that the equation is valid. I am afraid leaving it to the professionals is not an option that I am happy with. I will only be able to trust what they are doing if I know and trust the tools that they are using. So I would be grateful for help in answering these specific questions. Regards to all Sean
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sean I suspect you are not going to get the assistance you need in terms of definitions and mathematical proof on this forum! I think after many years of developing these diagnostic tools worldwide (also DAS56 and DAS78) the proof is in the fact that the DAS 28 is used regularly by all manner of rheumatologists, rheumatology nurses and biologic nurses and to great effect. Rheumatoid Arthritis is, as you will come to learn through experience, a very inexact science and everybody's disease is very different requiring any number of drug options to get the ruddy thing under control! Sometimes you may be prescribed drugs for which you cannot see rhyme or reason ... we have to be guided by the expertise and experience of those who treat us and trust them accordingly. DAS28 is most frequently used for assessing the efficacy of Biologic treatments and the possible need to change the medication as a result of this. Agreed, it can be used as a general assessment tool but this is more usually done by blood assays and face to face discussion. I would suggest the NRAS helpline may be your next port of call if you don't feel happy to allow the medics to do their job. I suspect you are going to find the way forward a very difficult one, but good luck anyway! Lyn
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Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Sean , there will be no mathematical proof in the traditional sense of the words, since part of the calculation takes into account the patients own opinion of their global health , and although mathematics can explain some things in nature completely .. i personally don't believe this is one of them. It is in essence an indicator .. albeit a very good one. It might be an idea to ask your consultant . I myself am happy that it is a good indicator of Disease Activity over time , and am willing to accept that , as much as the fact that i know the world is a sphere ..even though i haven't travelled round the world. If you want the scientific validations and such like .. look at these which I found using google ..The first link has a heading "pertinent literature " near the bottom ...:) RISE which highlights the development of the DAS 28.. You will have to put the titles into google yourself... they are online as i found them earlier . ... and another research project From Belgium and NL for patients on Infliximab and validation of the DAS28 HEREIt is all out there , but at some point you are going to have to trust your health care team or people who have lived with the disease and experienced the correlation between the DAS score and their own health. I trust the regular forum member's experience on here implicitly and do not feel the need to find definitive proofs as to why there is a square root of one figure and a natural log of another added together. Try the calculator link in my previous post and try random numbers in it to see what a change in one part of the equation makes to the overall result, then you will see how they tie into each other. Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
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Hi Sean
I can understand the desire to understand tools & techniques when it's your own health that's under investigation, when I was first diagnosed I spent quite a long time reading up on the treatments etc etc. And I think it's v important with RA to learn about it anyway, although sadly it's not a disease that can be controlled by knowledge and willpower alone. However, it's equally important to try to build trust in your consultant and rheumatology team as this is a two-way process. If you're lucky enough to have a good team then talk to them. I do as luckily my consultant is great. She explained how she uses the DAS score and it is only one of the things she factors in to the treatment plan. The first time I saw her I was a bit taken aback as she seems very, very young so I wasn't sure that she would have the depth of knowledge/experience. But the more I've seen her the more I've appreciated her mix of skills and grown to trust her judgement. So Lynn & Rich have it right, learn what you can about the DAS process but don't let it get in the way of building your relationship with your Rheumy team. And if you've gone from over 5 to 2 & a bit they must be doing something right! Good luck.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Sean
First of all, welcome to the forum. Sorry you have been diagnosed with RA but hope you will receive some support from the guys on here.
I'm Jean, 68, very supportive husband, daughter, son-in-law and two fab grandchildren who keep us very busy.
I inject Mtx weekly and my disease is currently classed as "in remission"
As for mathematical equations etc to study DAS, I think Rich and Lyn have already said it all.
RA is a very inexact science, or disease. Each of us will present with different symptoms. There simply are no hard and fast rules for RA and I do think, if you are to have any peace of mind, you maybe should learn to trust your clinicians or alternatively find a consultant you are comfortable with and have faith in.
Good luck
Regards
Jean
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Sean,
I havent a lot to say about the DAS28, mainly because its one of a range of tools to evaluate what is going on in RA and for me pretty pointless at times.
I wonder why you think it is so important?
A rheumatologist who is worth his/her salt will look at the bloods, DAS 28, presentation of the patient in general, length of early morning stiffness, fatigue effect, saloe colour and quality of skin, nails and hair effects, your ability to move/ stretch, organ and mulitsystem involvement, your HAC score and daily function, XRAYS, ultrasounds, MRIs, pain scores.
Are you thinking of changing rheummy?
There is a wealth of information and support on here. You are in esteemed company
Jennihow to be a velvet bulldoser
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Rank: Newbie
Groups: Registered
Joined: 3/23/2011
Posts: 3
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Jenni, 29.3.11@19.25Thank you for your response. I would like to check for myself that the DAS 28 is valid both clinically and mathematically. I am afraid I have not been able to find the wealth of information that you refer to. It is certainly not on the NRAS website. So if you could direct me towards where you think it might be useful to go to get specific answers then I would be most grateful. Regards Sean
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi again
If you type DAS into the main site search section, several links come up
including this:
http://www.nras.org.uk/a...ult.aspx?dm_t=0,0,0,0,0
the haq score has won acolade
http://www.hqlo.com/content/1/1/20
this is roughly what a good rheumatology examinatio should look like:
http://www.arthritis.co....nation%20technique.html
is this a help?
the info on these boards are full of people who are from first dx stage through to people who have had it for many yrs, i think our most snr person has had it for over 60 yrs. we have been there and done that between us in life generally but especially dealing with ra, medical people etc.
amazing bunch really!
Jennihow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Again as stated above all the info is on the internet , and there for all to see ...have you put "pertinent literature " titles and actually searched google as suggested in my link above ? because when i do that i come up with all sorts of scientific journals and validations for the DAS 28 .. If you really want to try these links with regard the validation of a DAS score through time ... http://www.ncbi.nlm.nih....mc/articles/PMC1004262/
http://www.kineret-eu.com/en/pro/faq/arifaq07.jsp
Then if that is not enough look on the pages for other links and papers from relevant medical Professionals and Researchers.. Also search through the RISE site .. there maybe a mathematical explanation, however i am concerned that if you did not know that ln was a natural logarithm then you might struggle with any further mathematical explanation. As for the mathematics ... it is not an equation where one side should equal another and can be manipulated ... but is a scoring system , where four different parts add together to give an overall picture ... for example ... the tender joint count part of the scoring system is 0.56 times the square root of the tender joint count (maximum 28) .. therefore the maximum score( 28 tender joints) there is 0.56 x 5.29 =2.96 which is added to the other three parts. A zero count of tender joints would give you a score of 0(to add to the other parts). Swollen joints have less of an input ( at 0.28 of the sq root of the swollen joint count) ... and the patients VAS (max 100mm) has a maximum input of 1.4 towards the total. You now have all the links to the research materials , might involve a little digging on your part , but i personally have spent as much time on this as i am wanting to. Bear in mind they are all clinical and Research articles which are way beyond me .. however i have read enough of the abtracts and the full text to be confident it is a very good indicator of disease activity over time :) I cannot emphasise more all the advice above from people who have lived with the disease for a while :) EDIT ...one more link (which you will have to search through) BMJ -Rheumatoid ArthritisRich "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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