Urgent help required! Is your DAS score <5.1 and your RA not well controlled?

[EmmaS-NRAS]

Dear all,

We are currently writing a consultation response for NICE on access to rheumatoid arthritis drugs. We are looking for UK residents who have a DAS score below 5.1, and therefore don’t currently meet the criteria for biologics, and whose RA is not well controlled (really struggling, worried about work, etc). If this applies to you and would be willing to either provide us with a paragraph about your experiences and the impact this has had on you, then we would be really grateful if you could get in touch with us as soon as possible.

The deadline for us to respond to NICE is this coming Friday, 22 February, so we will need to obtain written comments and phone interviews in the next couple of days. To get in touch regarding your experiences, please contact our Government Affairs Manager, Jamie Hewitt, on [e-mail]. Jamie would also be happy to speak to you on the phone - just send him an email with your number and he will call you back as soon as possible.

In addition, you can also complete the online poll that we are currently running on Health Unlocked as well.

Thank you in advance for your help.

Emma

Emma Seymour

NRAS Membership Supervisor

[Hidden]

I am happy to be contacted by NRAS to answer questions Emma but as I've already said, no one on my rheumy team has ever mentioned DAS to me so I haven't a clue what mine is or whether this method of assessment is even used in my area (NHS Orkney & Grampian). I suspect quite a few people here are in the same boat. Do you know if this is standard scoring method right across the UK and if so how do we find out what our scores are? Tilda

[EmmaS-NRAS NRAS in reply to Hidden]

Hi Tilda,

Thank you for volunteering, however on this occasion we are only looking for patients who have had their DAS score taken.

Although DAS is not the only way of measuring disease activity, it is one of the main criteria, determined by NICE (the National Institute for Health and Clinical Excellence,) that need to be met before a patient will be considered for biologic drugs. The NICE Guidelines state that to be eligible for biologic drugs patients must have previously failed on two conventional DMARDs, one of which must be methotrexate (unless there is a medical reason for not having it), and have high levels of persistent disease activity. The levels of disease activity are measured using a scale known as DAS (Disease Activity Score) which is calculated by combining a number of factors including the number of joints (out of 28) which are tender and/or swollen, and blood test results for inflammation levels.

More information on DAS is available on our website nras.org.uk/about_rheumatoi... and we also have DAS booklets and DVDs (with versions for both patients and health professionals) which can be requested via our website free of charge.

If you would like any furhter information, please contact our freephone helpline 0800 298 7650.

Best wishes,

Emma

[Hidden in reply to EmmaS-NRAS]

Thanks Emma - I actually knew most of this but am still not sure if this applies to my area or even to Scotland? I don't have a rheumatology nurse I can ask either and yet your question presupposes that everyone here from the UK with a diagnosis of RA and on treatment will know this?

[nottsexsportfanatic in reply to Hidden]

My rheumy doctor had an app on her iphone that she used to calculate my das score at my last visit. Not sure if its available on android phones.

[Hidden]

What's DAS? And how do you find out what your score is, nobody has informed me of this so curious. Thanks Elaine xx

[Hidden]

I Had mine measured but dony know what it was I assume it was greater than 5 but I DIDNT GET TOLD . I am struggling to stay at work . experiencing discrimination and abd bullying.. my registrar sain in letter I was very unwell but not sure if I qualified for ant tnf?? negative rhuematoid factor. mulitiple joints affected.. he gave me an immediate steroid injection.

[JennySLT in reply to Hidden]

I wasn't told mine either, I had to specifically ask for it. Also my DAS was taken when I was diagnosed last year but hasn't been since, so I don't know how often they do it.

[helixhelix]

Hi Emma, I might possibly be an example. I am currently taking 15mg sub-C MTX, 400mg Hydroxy and 2.5g Sulphasalazine, which I tolerate physically, but still have tender and swollen joints so this is not completely controlling my RA. However, I am one of the people who have a very stable ESR/CRP, which normally stays around 5 and and even when I'm flaring rarely gets into double figures. Since this is an essential element of the DAS calculation it means that my DAS score doesn't reflect my reality at all. My rheumy team were looking to move me to biologics, but my two recent scores were 4.3 (with 18 tender/swollen joints!) 6 weeks ago and 3.9 last week. Also, the worst affected part of me is my feet, and these are not considered in DAS.

So I have little chance of making the grade as far as biologics goes.

Let me know if you need more.

[sparker]

Hi my das score was over 5.1 and one consultant who took the das score said I could try biologicals and when I went back for the second time a different consultant said that he did not agree that I needed biologicals. I have failed hydro and Methatrixate and in my opinion I am failing on my current drug sulphasalazine. My disease is in my opinion active and is having a huge impact on my life. I definitely would not mind being interviewed.

Steph

[becky26]

Hi, I had my score done yesterday and it was 5.4 and im suffering really badly at moment both with joints and worries qould be happy to help.