CAN YOU HELP US?

NRAS is looking for volunteers living with RA who would be happy participate in some research activity with a company we are working with. The objective is to enable the organisation to gain a better understanding of the lived experience of people living with “moderate” RA. All the activity will be conducted remotely and should only take up a few hours of your time at the beginning of March. If you are interested and are willing to take part you must meet the following criteria:

•NOT on an advanced therapy, ie only on cDMARDs and/or steroids

•Really struggling with your RA but just not meeting the criteria (ie DAS of 5.1) to move onto advanced therapy

•Available to complete the activity in first half of March

•Access to and familiarity with a laptop/tablet or pc or smartphone

If you meet ALL of the above requirements and would be interested in participating, please email Janet Brewer, Engagement Manager at NRAS as soon as possible ([e-mail]) for further details.

Many thanks for your help.

[sylvi]

That sounds good, but i don't think i am a good candidate as i am going onto Abacept all being well pending Bloods and x-ray. I would look forward to seeing the result.xxxx

[BoneyC]

Please define “moderate” RA?

[vwtopaz in reply to BoneyC]

Most diseases fall under mild moderate or severe, my disease was thought to be mild, however scans showed moderate/severe, My RA diagnosis is under a year........ I’m still understanding this horrific disease. Hope you are well.

[nomoreheels in reply to BoneyC]

A DAS 28 score of >3.2 is considered moderate disease activity if that helps?

[BoneyC in reply to nomoreheels]

Many thanks, even after 50 years of this disease I am still learning.

Checking through my hospital letters, a DAS score of 3.73 was recorded a year ago by a "Psoriatic Arthritis Nurse Specialist (Rheumatology)" despite not removing my coat or any other clothing and not being examined!

Last September, a Rheumatologist wrote "Rheumatoid Arthritis (RF-, ACPA-, severely erosive".

In December, my daughter consulted a private Professor in Rheumatology and after 2 mins she commented to me, "I can see you have severe disease" - after seeing my hands.

I'll go with the professor, severe disease, so I'm out.

[nomoreheels in reply to BoneyC]

Clever how they perform a DAS exam that way, unless your inflammatory bloods were way up? That could account for it, despite not being a full exam. Were you asked to do a VAS? That's the one where you score your pain, on a sliding scale usually 1 - 10, the higher being the most pain.

Your ACPA must have been a strong positive, says it all. Then if it was that obvious to your daughter's Rheumatology Professor then I would think you're not in the moderate group, unfortunately.

[BoneyC in reply to nomoreheels]

my ESR & CRP are relatively low both are consistently around 4, have been for years. Thanks.

[bubblyalex]

Sounds great sadly I’m on Biologics so can’t participate. 🍀