DAS score increase

[Sapphire1701]

Hi,

I’ve just had my latest check up with consultant. I’m 18 months on from diagnosis, my original DAS score was 3.3 and now my score has been assessed as >5.1, so it has increased.

I was on MTX for nearly a year, but couldn’t tolerate side effects.. then been on Leflunomide for 5 months. Rheumy now wants me to start on biologic.

I have always had low CRP but have active disease and swollen right hand, and very painful knees.

Could anyone explain to me the DAS and does that mean the disease is likely to progress?

Life is very much a struggle; mostly trying to cope with work / manage finances - I’m a single mum - so I feel a little apprehensive that things are worsening rather than improving. Albeit I’m hopeful biologics will be effective. People keep asking me if ‘I’m better yet’ and it drives me mad..

[AgedCrone]

There is no certainty with RA. Two people with a very similar initial diagnosis can travel two very different paths.

However your Disease Activity Score is now up to 5.1 & as you say you are eligible for biologics. ..having failed on two DMards, one of which was Mtx.

A lot of us veterans waited over 15 years to be offered biologics …..as way back they were very expensive and very elusive, so speaking from my own experience …I’d say grab the offer of Biologics with both hands, and don’t search around for the one that sounds most attractive, because what is attractive to one person is poison to another. You will probably be offered a choice of oral,injections or infusions…of a Bio your rheumy thinks will suit you, Now is definitely the time to listen to your Rheumatologist. To get the most successful outcome, his/her training and long experience is worth listening to.

I was put on a biologic in 2016 …very successfully & I haven’t looked back.

Your reply to those really irritating people who ask “Are you better yet” is either “No RA is incurable” or “Well..I am just starting a new drug…so soon I hope” Both replies will hopefully mean they don’t ask again!

Good Luck..hope your rheumy gets it right first time!

[Amnesiac3637 in reply to AgedCrone]

Excellent explanation. No more to be said!

[AgedCrone in reply to Amnesiac3637]

Been there, done that…you don’t forget do you?

[Amnesiac3637 in reply to AgedCrone]

You certainly don’t. We’ve got the tea and medals!

[Sapphire1701 in reply to AgedCrone]

Thank you that is a really good explanation and I feel for all of you that didn’t have such drugs so available

I’m starting on Adalimabab injections.. so fingers crossed they help..

and yes I will try that response!

Thank you x

[CagneysMum in reply to Sapphire1701]

Hi Sapphire

I was diagnosed with RA almost 5 years ago and 3 yrs ago Adalimumab changed everything for me 👍 I have a little stiffness in some joints and get fatigued more easily.. but no pain to speak of and no joint inflammation unless I over do it. I hope it works as well for you 🤞, but if not we are fortunate to have been diagnosed at a time when there are many different biologic drugs available to us to try so give it time and you’ll get there.

Regards the DAS score … it’s a rather crude/basic way for them to assess how active your RA is at any given time. They will ask questions such as “on a scale of 1-10 how painful are your hands/knees today etc and then attach a score depending on your response. Because we all deal with pain differently this is quite subjective in my opinion but currently the only measure they have.

[Sapphire1701 in reply to CagneysMum]

Hi, thank you that’s reassuring to hear. I’m really hopeful. I’ve been in a lot more pain past 3 months (am under a lot of unavoidable stress which I’m conscious is not helping)..

I’ve never had high inflammation in bloods, only been seen by ultrasound at joints. So I guess the DAS is on this and my pain score..

but fingers crossed 🤞🏼 I need to get well enough to get a new job because mine is beyond stressful.. but that feels like an immense mountain to climb in my current state!

Glad to hear you’ve got on well with it.

Thank you

[CagneysMum in reply to Sapphire1701]

I’m convinced that stress (at work) triggered my RA. Always worked full time .. always enjoyed work and then came the boss from hell. And RA arrived 18 months later. As an interim measure perhaps you could seek advice on any coping strategies for managing your stress levels … NRAS are a great resource and always happy to help? Good luck on your journey and hope you get some relief soon xx

[wilbertjellyfish]

The DAS assesses your disease now so they can decide if your bad enough to qualify for biologics but it doesn't mean anything when looking at the future. If the biologic works your DAS will improve.

Before I started biologics I was really sore but my bloods were good so my DAS was low, one day I had an appointment and my bloods weren't great, the nurses were all excited to do the DAS because then it would be high enough to qualify for biologics.

[Paula-C]

Think you'll find this helpful.

nras.org.uk/resource/the-da...

[Bethany02]

Over 40 years ago I seen the effects of RA on patients long before the event of biologics it was so hard for the patients, so limited in what they could do and in so much pain. I thank all that is good that we live in times where these drugs are available I seen the results of them not being in use and it must have been so hard. Try not to fret if they are not amazing because there are so many available now. It just takes time and frank discussions to get to where you want to be. There are loads of stress management videos on utube but I find a chat with myself the best way to offload stuff. Each to their own you will find your way.🌟

[bpeal1]

This is a helpful (but brief guide) to DAS score. nras.org.uk/resource/the-da...

When they say assess 28 joints you get 1 point for each of the swollen joints and 1 point for each tender/painful joint. This is then put into a formula along with your CRP or ESR from your blood tests and your 1-10 score on how you are feeling and the DAS score is calculated.

DAS doesn’t predict how the disease will progress - everyone is very different and responds differently to treatments. It’s just a snapshot of how active the disease is at that moment and can be used by the rheumatologist as a guide to what the next steps should be.

[bpeal1 in reply to bpeal1]

PS here is a link to a calculator if you want to calculate your own DAS. (It also shows the formula used at the bottom of the page)

4s-dawn.com/DAS28/