Grhhh DAS score ...

[claireyj]

Hi everybody hope you are all having a good day.. :)) ..Want to put this blog on because I can't believe that a DAS score doesn't consider feet ...that's ridiculous?!!! I'm currently on 20mg injectable mtx and have tried Sulphasalazine but unfortunately couldn't tolerate it so due to very bad and painful flares particularly in my feet my lovely lovely rhumi team think it would be time to maybe consider biologics ..I have a RF factor of 340 and am positive but my bloods never show inflammation my crp levels are always normal , this makes my degree of pain etc hard to monitor ..I know it bloody hurts (excuse me) but can only rely on DAS as a guide /next step to biologics ...I do suffer with my hands and hip but the most painful part of me is my feet and an ultra sound last month confirmed this and the pain as everything was inflamed hence finding it very hard to walk. As I understand its is very common for RA people's to suffer with foot pain even my physio lady told me that , so why then isn't it considered in your DAS crazy bonkers I say wonder if you agree ...Claire

[Mags126]

Yes yes yes! I do agree but I'm afraid I don't know why feet are included. I'm a bit like you Claire in that I don't show inflammation in my blood results although my body more often than not says otherwise. I was on injectable MTX until my body decided to completely reject it and then tried Leflunomide which didn't agree with me so have been down the biologics route and after 2 DAS assessments I finally started Cimzia this week.

I hope that your Rheumy team get you on the biologics soon - sounds like it's what you need. Good luck,

Mags x

[claireyj in reply to Mags126]

Good luck with the biologics Mags keep us updated xx

[Hidden]

I've read that feet aren't included but my rheumy always examines my feet (well once a year when I see him that is!) nonetheless so it's an obvious place for RA to be as well as the hands. I think I read that it's because foot problems are so common and feet are so used that it's a given but I maybe wrong? I am fortunate not to have suffered for a long while with my feet although for a few months at the start I had very swollen toe pads and then a nasty bout of pain and swelling in my left ankle tendon and toes would suddenly become terribly painful. And I feel equally outraged that tendons aren't included in the DAS because half my problems have been to do with tendons being inflamed and painful - but at least this does show up in my blood (ESR) so I know I'm lucky in this regard.

However it could be even worse - some people have sero-negative RF and anti-CCP and also don't have raised inflammatory markers but still have very aggressive RA. But in answer to your question yes I do agree that it's bonkers that feet aren't included in the DAS. X

[helixhelix]

Like many others my feet are my worst bit, and I also went through the Grrrrr moment with DAS scores. Apparently before the DAS 28 that is commonly used now, there was a DAS 44 that did include feet. But research showed that it didn't make an overall difference if you only looked at 28 joints rather than 44, and feet don't swell the same way as other joints so are more complicated to assess. Which I do sort of understand on one level, but on another Grrrrr! What the docs/researchers seem to forget is that we are individuals, so telling us that it makes no big difference to overall numbers when measuring thousands of people is so completely not the point if it makes me feel less properly assessed. And yes, my ESR/CRP never budge much either.... so Grrrr! Polly

[Vonnie55]

Hi Claire,

Interesting you brought this up! I am currently waiting for my Rheumy to apply for biologics using DAS sore for my feet, yes feet!

My hands don't show much swelling or inflammation, therefore i have failed for anti- tnf in the past.

I have always suffered terribly with my feet and had a fusion done to a foot joint, due to RA two years ago. (sero-negative)

At the time i was on gold injections and had to come off them prior to surgery. Since then i have not been on any dmards, just paracetamol & tramadol.

My pain and flares have increased and i brought foreward my review appointment as started getting pain in opposite foot exactly like the one i had to have fusion on.

I took the liberty of getting GP to refer me for x-ray to foot so Rheumy would have it at appointment.

It shows early onset of arthritis in the offending joint, also erosions to toe joints, not good.

I told him i couldn't go on anymore with the pain and i needed something to slow down process. Apparantly, it takes up to two years for the gold to leave the body, which is why things have become worse.

So i am waiting again for the news whether i've been given the go ahead, third time lucky.

This is the first time he has used the feet as an argument for biologics, very interesting, so watch this space! Vonnie xx

[Hidden]

There apparently not supposed to include your feet or neck in a DAS 28, due to there being too many people get normal wear and tear in these areas, stupid I know as my feet are really bad too.

Mine always checks my feet in an examination for DAS but never includes it in there scan there is another version a DAS I think it's a DAS 48 or something like that that covers every joint but not many rheumatologist use this one.

[Paula-C]

A lady a while back put up a post that you may be interested in

nras.healthunlocked.com/blo...

I also found a site with a DAS calculator

4s-dawn.com/DAS28/DAS28.html

When I was being assessed for anti tnf's I checked my score using the calculator, I knew how many tender and painful joints I had and my what my CRP was.. I was worried that my input of my VAS score may of been too high ( I put it at 75) which in turn raised my score, my DAS score that day was 7.2. I kept lowering the VAS score and to be honest it hardly affected the overall score at all. I just think that they like us to think that we have some input into the final result.

Hope it makes things a little clearer.

Paula

[Hidden in reply to Paula-C]

I have relatively little pain so usually tell my rheumy that my VAS is about 4, At the very worst I've said 5. My ESR is usually high but it's low-ish at the moment. I've got a rheumy appointment next week so have been trying out the calculator. For me entering a higher than usual VAS score did make a significant difference & I think I need to make it reflect things like depression, anxiety & the difficulties of day to day life rather than focusing on pain or lack of it. Luce x

[Paula-C]

Whoops...just seen someone else has already put up the link to the calculator.

[Hidden]

I agree Claire. The DAS score doesn't include hip joints either. I think it's time they stopped using DAS as the main criteria for Biologics - it's illogical & morally wrong. Hope your rheumy team find a way round this. Luce xx

[claireyj]

Thank you everybody for your comments and links etc , needed to share it thanks ..hope you all have a good weekend C xx

[TweeterCal]

Hi Clairey, so glad you posted your concerns. I am exactly the same. My feet are sore with moderate to high pain every day. They are continually ignored at the Rheum Clinic and they tell me I'm in remission! I tell them I am in agony! So, I have been referred to Podiatrist who confirms its not Planter Fasciitis and he has referred me to a specialist. Meantime I am waiting for a neurology appointment as they think its neurological! The time and expense is embarrassing as I already know, It's RA! The DAS28 scoring system is discriminating against foot pain! So, when I do get to the bottom of it, I will post on here and let folk know. Sorry your feet are sore but glad you posted your experiences, all the best, Cal