Das score link.: Hi does anyone have a link for das... - NRAS

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Das score link.

Vonnie10 profile image
14 Replies

Hi does anyone have a link for das score I need it I'm sure the nurse at rhematology as done mine wrong she is new nurse at the department and she as mine down as 3.2 I've googled some info but don't know if it the right das score link .. i didnt have time to read the letter from rhematology clinic letter turned up Friday but that's another story of what's. wrong wrong . I read the letter today properly its gone to my gp also it says I have mild inflammation and I have a problem with my right hand and 2 fingers waiting a scan and to review pain relief None of this is true ive been in a terrible place posted on here about it im sorry if I'm.going on but to my calculations I have 10 joints on each hand can't even make a drink when I wake up take me a good few hours to get moving im I'm bit of a better place with coxib drug but definitely not back to were I was pre flare up knees wrist elbow and shoulder all been torture on both side morning time is hell untill coxib drug kicks in take a.good few hours to work How's she not picked up on this is beyond me im so mad and angey 'd like to have my fact straight if she scored my das wrong would like to be for armed before I ring get it changed looks like im OK on paper and nothing will be done . I should go pals because it seem to me the patients who complain the most have better treatment . Sorry to go on at you lot🤯

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Vonnie10 profile image
Vonnie10
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14 Replies
MuppetBaby profile image
MuppetBaby

I use this one 😊

4s-dawn.com/DAS28/

Bakerannie profile image
Bakerannie in reply toMuppetBaby

Karen that link is brilliant, thanks so much.

Vonnie10 profile image
Vonnie10

That's the same one I went on so one side is for stiffness and one side is for innflamation is that right ?

bpeal1 profile image
bpeal1 in reply toVonnie10

One side is tenderness (ie it hurts if you squeeze it) and the other side is swelling (swelling can cause stiffness but they’re not completely linked - you can have one without the other)

Neonkittie17 profile image
Neonkittie17

Can you send an email to the rheumy/nurse saying what you’ve said to us that you feel you’ve more tender joints and pain in them for the DAS than was actually taken into account? I let my rheumy know if I think there’s been an incorrect important detail in my letters, by email as they don’t always get it right and yes there have been some detailed letters for her to write due to a lot going on with me so I’m not criticising her as she’s lovely and very good.

I’d reply to that letter you’ve got and say they seem to have not recorded eveything relevant for your DAS score from the meeting with the new nurse. Say it doesn’t seem to reflect the awful painful state you are in at present. When I go to my clinic reviews my rheumy likes me to take her a copy of my notes to her like a little report/update. Then she can look back at it to see what I’ve said is my main problem etc and bases her letter to the GP on it as well as her exam of me and our chat. Fully understand how upsetting this is for you to given a score that doesn’t reflect how you are. 😑 Make it known politely of course and say in no uncertain terms you are in agony and really struggling even with the pain relief. Sorry this is happening. Sending love. 💗

Vonnie10 profile image
Vonnie10 in reply toNeonkittie17

Hi nk I'd don't know if tbey have email I'll find out it makes better sense to email rather than a chat I want it fixing though it's definetly not a true reflection of what gone on . Your on the ball with your notes I should do the same in future . Hope your tooth issue is settling down.❣️

Fra22-57 profile image
Fra22-57 in reply toVonnie10

when my reports from rheumatology are sent to me each visit they always have bits in that are wrong.I ring the secretary and she says she will alter but it gets ignored.hopeless these doctors

Neonkittie17 profile image
Neonkittie17 in reply toVonnie10

I am very geekiky efficient 😝 with the notes and let them know and it’s also because I have 4 consultants who don’t always update each other. My tooth is healing but been very slow as it was awful to extract. The hellish pounding like a heavy metal drum solo stopped but still earache and neuralgia and need these stitches addressing so I’ll phone tomorrow. Today will be too busy after the bank holidays weekend. Hope soon you hear something. If you’ve got evidence in email or a letter they can’t say you didn’t tell them something. Also I copy any emails to my rheumy to my GP and other consultants x

oldtimer2 profile image
oldtimer2

On one occasion I had a copy of a letter written by the nurse specialist who had clearly got me mixed up with someone else (even the diagnosis on the letter was incorrect). I wrote to the consultant's secretary pointing this out. The reply was, i thought, rather low key for such a major mistake! But I haven't seen her since.....

Vonnie10 profile image
Vonnie10

I've rang spoke to a ward Clark I don't hold put much hope she said she'll pass the message on I honestly give up at this point.

Celticdancer profile image
Celticdancer

It could be 1 of 2 things whereby this nurse is incompetent at her job or the guidelines in which health professionals are working under now has changed and they`re told they have to downplay the severity of a patient`s illness, pain etc because the NHS want to reduce the amount of medications, treatments they`re now giving out to cut costs. You could complain to PALS but be prepared that even if you do, nothing might get done about it as the NHS is kaput anyway. Saying that generally speaking, the more you complain nowadays, the more likely you are to get better service. It will gradually be completely privatised and then everyone will have to pay to get good healthcare. Rishi wants Doctor`s receptionists to decide if you`re allowed to see the Doctor (which they do already) and he wants pharmacists to prescribe antibiotics. Let`s see how well that does!?

Vonnie10 profile image
Vonnie10 in reply toCelticdancer

I honestly give up been in absolutely hell for over 2 months I'm on toclizumab which is very expensive I've rang helpline but could only speak to sec/ ward clarke. It is the case of them who shout loudest are heard .

ChillySwimmer profile image
ChillySwimmer

My bugbear with DAS is that it doesn't take all the joints into account. Before I was on Benepali I had a lot of trouble with my feet and the top joints of my fingers (nearest the nail). Apparently these can't be definitively and unambiguously linked with RA so they just exclude them. But the involvement of those joints in the disease makes the DAS number seem surprisingly low given how you actually feel.

Of course the nurse might have been wrong as well. Hope you get more clarity soon.

Vonnie10 profile image
Vonnie10 in reply toChillySwimmer

It's my joints thats all included in their. das score hands knees shoulder elbows wrist and hands

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