DAS scores and NICE rules

[Frankiefarr]

Just pondering really how rigid the NHS rules are on biologics. At the moment I am not tolerating any of the dmards, they have just started me on a very low dose of lefludomide to see if I can tolerate it and I am also on steroids. So far I've failed on three dmards. I have active disease and swelling across my body however no matter how swollen my joints are my CRP is always normal and a major area of my disease is my feet which aren't counted. I'm in position therefore of only scoring 4.77 when everyone agrees actually my disease is very active. Under the NICE rules I wouldn't qualify. I am just wondering how they can justify passing this test as mandatory when it has recognized flaws?

[helixhelix]

The NICE stuff are guidelines, not rules. The NICE approach aims to make the best use of public money by giving evidence based advice on best practice. So as far as I'm aware it's actually the individual foundation trusts that make the decisions on funding biologics. Generally they (surprise, surprise) stick to the guidelines but I think that there is a way to appeal for an exception, or for your consultant to do so. Ask the PALs service at your hospital.

[Frankiefarr in reply to helixhelix]

Reading on the NRAS site it says a DAS score of over 5.1 in mandatory. But yes guidelines which most areas stick to unless it is going to cost them more then they are happy to ignore it.

Just concerned that the terminology used is "mandatory" for such a flawed test

[helixhelix in reply to Frankiefarr]

Love NRAS tho' I do, it's the language in the NICE pathway that's the important bit. And I don't see mandatory there....

pathways.nice.org.uk/pathwa...

[helixhelix]

Or there's a procedure called "individual funding requests" which allows consultant to request stuff not normally provided by NHS. So not exactly the same circumstance but if there's a procedure for that then they'll also be other routes - I just haven't found them yet.

england.nhs.uk/commissionin...

[Frankiefarr in reply to helixhelix]

I used to be an NHS commissioner so I know how they think and I know how much emphasis they put on NiCE guidelines if it's in their interests

[helixhelix in reply to Frankiefarr]

Absolutely! But then you probably also know that determined people can push boundaries until they bulge enough to accommodate them.

[Loobeyloo]

My experience has been exactly the same as you. My feet have been incredibly painful and at times the only painful part of me, and I hate that they are ignored in the DAS score process. I went to an NRAS meeting some time ago that was all about pain relief and treatment and asked the consultant speaker why feet are not included, and he said that they don't 'count toes and feet' as they would generally 'mirror' fingers and hands. He did however, explain that he had one patient who was only affected in their feet, and he argued that this persons life was not of a good quality and managed to get biologic treatment for his patient. So it is doable. Once I heard this, it helped me keep on fighting my corner.

Talk to your RA nurse as they are better at getting you through the biologic process, We knew it would flare up as soon as I stopped the steroids, so 'pencilled in some appointments' which I could cancel if I didn't need them. I then went in, and my RA nurse did the visual check and recorded all the painful joints during the flare up, and we had to repeat this again to meet the NICE guidelines and biologic criteria.

Keep a very good diary. I also kept photos of the swollen parts of my body to show how it flares up and affects me between appointments.

There are some good books on the NRAS website for recording symptoms. Hang on in there, it is doable.

[Frankiefarr in reply to Loobeyloo]

My toes and ankles are way more painful than my hands. My hands hurt when inmove them or use them but my feet hurt constantly to the point I could chop my feet off. My toes are horribly swollen. I would certainly say they don't mirror my hands

[Hessie5]

Hi - I suffer greatly with my ankles l/feet leaving me unable to walk properly. I was diagnosed back in November with RA with a high CRP. Just wondered what you meant by your feet not counted ? I have asked for an ultrasound as been told by a private dr I have Posterior Tibial Tendon Dysfunction - a result of the RA no doubt.

[Frankiefarr]

Hi in the DAS score used to assess whether you have active disease they don't count your feet so those joints are ignored

[Crusee]

Hi Frankiefarr

I have recently been accepted for the biologic drug ethanercept (enbre) having failed on 3 Dmards.

I had 2,episodes of AKI( acute kidney failure) in Nov and Dec of 2015.at that point all RA meds were stopped for 5 months until my kidneys improved I was thenu given steroids which helped but I am not going to be able to take them long term due to other medical conditions.

I asked my rheumy about biologics as I had read a number of folks on this site had success with them .Rheumy said its quite difficukt to get accepted for them but suggested I stop my steroids for a few weeks befire the text to nake me feel arbmy worst.He said this is almost inhumane but it will give me a score over 5.1 which is what is required.

I stopped the steroids and sure enough puffed up like a balloon.I them had my DAS 28 test and scored 25 out of 28 joints.Interestingly enough feet are not included in this test.They assume that if your hands are affected then yiur feet are too.

I flew through with the DAS score (cant remember mine now) I also had blood tests and a chest X- Ray which confirmed there were no underlying problems that prevented me taking the biologic.

My funding has been accepted and I have already reveived the meds .Unfortunately,and the annoying thing is as I have an open ulcer on my leg I cannot start the biologic drug until that clears up.

So thete are ways to buck the system but woukdnt recommend leaving off meds without prior consultation with your rheumy or rheumy nurse.

I wish you luck in getting accepted.

Take care.

Crusee

XX

[Scottishlad]

My consultant thought I would be an ideal candidate for Biologic therapy as I have reached the limit of MTX, 25mg, and was getting mouth sores. My DAS was around 3.8 but blood tests were not showing much inflammation and holding back the DAS score. My MTX was reduced to 15mg sulfasalazine and Hydroxychloroquine were dropped as she felt they were not doing much for me. My next two DAS scores came in at 5.2 and I started on Cimzia and my MTX was reduced to 10mg. I have since had Hydroxychloroquine added back but my RA is now very well controlled.

NICE guidelines are an arbitrary decision, my consultant told me in Scandinavia the figure is 3.2!!

[Dellylou]

Hi I have adult onset stills disease , in some ways similar with flares and joint pain, I am currently waiting for a decision on biological medicine (kineret) and feel my consultant has completely messed up with the application (sent on the wrong paperwork first, then to the wrong place & thirdly without the correct signatures), I have been waiting since August last year for this and have been on steroids and tried methotrexate but failed on it. What is a DAS score please? How long did people wait to receive a decision about funding? I feel I've waited for so long and have actually felt a lot better, albeit I have awful pain in my knees, feet and hands. I just feel I'm being fobbed off?? Thanks for reading x

[Frankiefarr]

For me the issue is I never have an abnormal CRP marker no matter how much inflammation is going on. It is well known that this happens in some people but it artificially lowers the DAS score

[Frankiefarr]

Sorry that should have said normal CRP

[net2012 in reply to Frankiefarr]

I am the same as you Frankie never have high CRP scores. Luckily a nurse whom I had an appt with saw me during a flare with my feet, and I had had my bloods tests done just a few days before appt, and she said you are one of those who even in flare don't have high CRP, but she noted it down that I was in severe flare. I failed dmards too, although I am still on methotrexate. I failed my DAS tests too, sort of same score as you but was told my consultant can sort of over ride the results, and indeed I was put on a biologic. When you give your score for how you are feeling, how high do you go. It is usually one to ten. I would go for the ten next time.