Interesting, I have my DAS score done every time I go for an app.
Wonder if other folk do, or does it tend to be done more during difficult periods of inflamation?
Zena xx.

Hi All

We have a good booklet on DAS if it is of help to anyone. You can download or order it online or give us a call and we can post one out to anyone who would find it useful.

i have never been told anything from the start, when i do ask i get the "if theres a problem when bloods are done we will let you know,"so annoying and books never filled in,i struggle to get a nurse sometimes to ask when at clinic and the consultant is always so busy, my doc is so nice he does take time if he has it but its not right, i feel it should be standard for us to keep records incase of emergency we have info at ready or why did i get the nice little folder being on mtx, dorothy

Hi all - I like my little book and take it to every appointment. It's not the one produced by NRAS, it's printed by Torbay rheumatology. I think it's very useful to keep track of my scores, and I often have to chase up my blood results - it's not something that the clinic offers if you don't ask them. They only contact me if there's a problem, but I like to know that it's OK, so I ask.

Sylvia xx

Hi All

I am pretty sure the DAS is only important if they want you to go on the anti-TNF drugs. You then have to reach a certain criteria and to stay on the drugs (which are expensive) there has to be a certain percentage improvement in the DAS score, from your original base line scores.

I've had mine done for the assessment process (it needed to be two high on 2 occasions a month apart) and then it is done every 6 months to check the drugs are still working. The problem is that to make sure it is high enough to qualify for the new drugs, you need to cut back on the steroids (if you are on them) - as it has to be at its worst!!! A bizarre system in my opinion!

Portsmouth have been trying out a new computer programme that patients can do themselves... but when I tried it as part of the 'test' - the questions were very ambiguous and difficult to know how to answer!!

Anne x

Yes - the GP printed me off a copy of my full test results on one occasion (when I asked him) - there were a lot of results that are not key indicators for RA, and some of the headings were called slightly different things, but it was certainly interesting. I usually ask the phlebotomist on my next appointment, but I have to take the little blue book so she knows which results are being tracked specifically. I know what you mean about her being busy, so it makes sense if she just prints off a copy that I can take away and fill in the booklet for myself - that's a good idea Naomi - I think I'll ask that next month. I always think it's essential that we become knowledgeable as patients, but there's so much so take on that we need a bit of handholding in the early stages - but gradually we can take on more and more of the checking for ourselves

Sylvia xx

I normally give my booklet when I go for blood monitoring at my hospital and the nurse then puts in the previous months results. I believe that if you are taking MTX orally you should produce this booklet when picking up your MTX from the pharmacy. When I took MTX orally I was only asked once if I was having my bloods done. I carry my booklet in my handbag and it is also taken with me when we go away.

I read this in the biologics booklet that NRAS sent me regarding having to have two DAS scores done.

A recent study suggested that the month between assessments before starting anti -TNF is an unnecessary delay, because patients who fulfilled the criteria one month before commencing treatment had a 97.2% chance if doing the same at the first assessment. The overwhelming majority of patients therefore have an unnecessary wait with very active disease.

Reading that I think it is unfair that we have to go a month in pain just to satisfy NICE guidelines. Perhaps them that dictate what we have to do should give it a try first!

I have found a link on Healthunlocked which our lovely Lyn-W put on (Oh, how I miss her and her knowledge and advice on RA..... come back Lyn)

http://nras.healthunlock...-activity-score-----das

Paula xx