Asked rheumy nurse at last appointment, which was 1st appointment since being diagnosed earlier this year that i felt id found one of the nurses who took the time to explain everything to me, and asked him about das. I told him id joined a forum and people talked about it. He said it was helpful i had people to talk to but said id never been tested for das score as it was unnecessary!
Got totally side tracked as since i found he actually listened to me and replied i really did bombard him with questions.
Why, does anyone know, have i never been tested or have a das?
Also wondering why ive never had a follow up with consultant. Is this normal or should i have had one? Was finally diagnosed about april this year so its 7 months.
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Josie2
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Some places don't bother with DAS scores at all, others do. DAS is just one of many ways to monitor how your disease activity is getting on, so as long as your rheumy team are keeping some kind of check then it doesn't make any difference. The only time it matters is if you live in England, and want to change on to anti-tnf drugs when the DAS scope is used as part of the assessment as to whether you can have them or not. But maybe in some areas of England they also have other ways to assess.
And re seeing a consultant, it does happen that way. Not ideal but with the lack of rheumy's it seems we end up taking what we can get by way of follow up. The rheumy nurses do work closely with the docs, so will be discussing anything they need to with them. And if you get on well with your nurse then that helps too. Polly
Neither my consultant or GP have ever mentioned DAS to me and I don't have a specialist nurse to ask. I am pretty sure if I did ask, and I've only seen my consultant once in a year since diagnosis, he would say it isn't the way he does things. But then I live in the north of Scotland - although I notice Williby who lives in the Highlands does know her DAS so I don't think it can just be a Scotland/ England difference? Tilda
I've had my DAS score noted at each appointment I've had with either the consultant or rheumy nurse. However, I tend to think it can give false readings, as the last time I saw the consultant he did the usual and asked me what I thought my level of pain and stiffness was and possibly, stupidly, as I was having a good day, I said about 3/10. He then went on to work it out and said he thought I was in a drug induced remission. I was totally glad about that but of course since then I'v had a slight increase in pain and stiffness, although nothing like before treatment! I wish now Id given him a higher number as he then said he didn't want to see me for another 12 months!
Hi I got diagnosed in August and hav never had a das score either,I saw my consultant in July and my nxt appt is with the nurse in December,so don't worry ur not alone.love Michelle xx
Only had das score done when moving onto anti-TNF. Diagnosed nearly a year and have never been seen by a consultant, spoken to her on the phone but never actually seen her. Doesn't worry me very happy with my rheumy nurse
Hi, I've had a DAS done on every Cons appt, nurse appts and also at my physio appts too! Obviously its the protocol at my Trust, the nurse has given me a booklet in which all my blood results, med changes, vaccinations etc are documented and the DAS has its own column so I guess its part of their assessment. As far as I can see, its just another way of documenting changes good or bad of swelling/pain/fatigue, just in a formulaic way-prob saves writing it all down! As long as your joints are being properly examined regularly for changes it doesn't really matter how they record it as far as i can see
Hi Josie2
As the others have mentioned it does seem to vary between hospitals how often, or if DAS is recorded. When patients we speak to have asked their rheumatology team why their DAS has not been measured one of the major factors seems to be lack of time in appointments. One occasion it would usually be used is when assessing for biologic treatment as having a DAS of 5.1 or above on two occasions, one month apart, is one of the criteria that needs to be met according to the NICE guidelines. If you'd like to read a bit more about DAS we have a whole section on our website: nras.org.uk/about_rheumatoi...
Time between consultant appointments can also vary widely. You would hope that these would be a little more frequent initially but once a patient is stable on treatment it would not be unusual to have just an annual review with the consultant. I'm glad you have been able to have a good appointment with the rheumatology nurse in the meantime. If you think of anything else you'd like to ask, and the nurse isn't available, the NRAS helpline may be able to help: 0800 298 7650.
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