Our poor feet suffer too: I can never understand why... - NRAS

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Our poor feet suffer too

mille profile image
15 Replies

I can never understand why, when I go to the hospital, that they look at my finger joints and knees and perhaps press my shoulders but never once in all the time that I have been going have they ever asked about my feet or toes. At the moment I am having problems with my ankle but they never count that when they are doing their DAS Score and I don't know why this should be. I hate having a sore shoulder but at least I don't walk on it so please can someone tell me why they don't think our feet are important enough to count. It got me thinking perhaps we don't really need feet and we should learn to walk on our hands. Sorry, I am being silly now.

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mille profile image
mille
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15 Replies

Hi, please see the extract below- from St George's hospital, Tooting.

The DAS28 is a measure of disease activity in rheumatoid arthritis (RA). DAS stands for 'disease activity score' and the number 28 refers to the 28 joints (commonly affected by RA) that are examined in the assessment. An assessment of DAS involves the rheumatologist or specialist nurse looking at the number of tender and swollen joints (out of the 28), the erythrocyte sedimentation rate (ESR) or C reactive protein (CRP) both of which measure the degree of inflammation in the blood, and the patient’s ‘global assessment of health' (indicated by marking a 10 cm line between very good and very bad). These results are then fed into a complex mathematical formula to produce the overall disease activity score. A DAS28 of greater than 5.1 implies active disease, less than 3.2 well controlled disease, and less than 2.6 remission.

I did not now this until you asked the question so thank you , now this makes perfect sense, not what us RA sufferers want to hear especially if we are borderline for Anti-TNF

Hope it helps- will send you details of full document of you wish

Katie

My feet were included in my count for PsA so not sure why the difference for RA.

in reply to

Hi Georje,

the scoring for PsA is completed differently, and includes things like skin and nails. I was quoting for DAS28 in RA from the Journal of Rheumatology website. This was documented by a Professor of RA two years ago

Hope this helps

Katie

mille profile image
mille in reply to

Thanks Katie & Georgie for your replies. I still can't understand why they don't include the feet and ankles for r/a when counting joints. That means if you only had a few finger joints sore but your feet were making it difficult to walk then they would just count the finger joints in the score and it would be low. I always feel it is more serious when my walking is affected. x

The idea, so someone on this site explained, is that as everyone uses their feet to weight bear, there are a number of other reasons why feet can be very painful apart from RA. I don't think this is particularly reasonable really but it is what I have learned. My rheumy always checks my feet (I say always but I've only met him 3 times in over 2 years!) and ankles anyway though but I don't know if he has been taking my DAS or not. I will find out in a few weeks when mine is taken with a view to eligibility for anti-tnfs. My feet are often a bit sore and an ankle tendon flared a lot last year. Fortunately for me the inflammation showed up in my ESR anyway. Hope this helps. Tilda

mille profile image
mille in reply to

Thanks for your reply Tilda. I am on a biologic drug so I shouldn't complain as I am getting the treatment but most of my pain at the moment is coming from my feet, especially my ankle. x

helixhelix profile image
helixhelix

There've been quite a few blogs on this, as it's a sore point for lots of us who's feet are the worst bit! You might find them if you do a search. From memory tho' the main reasons feet aren't included is that it's not as straightforward to determine if they're tender & swollen for RA reasons, rather than other problems. Also they used to use a DAS44 which included them, but research showed that in overall terms it made no difference, so dropping to 28 joints is easier! Neither reason is much comfort for those of us with painful feet tho'! However, although my rheumy ignores them for the puposes of DAS scoring, she does pay attention to them generally and has helped by referring me to the podiatrist and so on. So do keep telling them, as there are some things that can help. Polly

mille profile image
mille in reply tohelixhelix

Thanks for your reply. I guess they must know what they are doing. It does make me wonder when they hurt so much. x

At least there are foot specialists everywhere. Hand specialists are pretty rare so I guess it is more important that problems with them are picked up early enough but I do see how unfair it must be re anti-tnf assessment.

mille profile image
mille

Yes I suppose, unless we go to the second hand shop lol

Well as one whose hands are presently horribly sore and twisting I would settle for second hand hands over anti tnfs but I will try and see the worsening pain in my hands as fortunate in some bizarre sense! What a weird world we have been pushed rudely into eh?! X

mille profile image
mille in reply to

So true Tilda, life can be a bitch at times. Have you reduced the methetroxate? I wouldn't have thought your hands would be twisting so soon. Perhaps it's time to add something else. x

Well I am a bit paranoid about them its true but I just feel they are being tugged by invisible threads and that, very, very gradually - all my finger nails are turning round and fingers are slightly splaying. If I hold them out, fingers stretched, then my right hand sits in a very wonky manner. But I could just be imagining this I think although husband says I'm not unfortunately! I'm on the lower dose of MTX but it is by injection and its still 12.5mg. My hands have been doing this over 2 years so its not that the MTX lower dose has made this worse but because they ache its made me notice it more - that's all. Feet ache too and ankles and knees are increasingly stiff but I tell myself it could just be the hot weather and the fact I'm travelling just now. Have you tried rubbing volterol or ibuprofen gel into your feet I wonder? X

mille profile image
mille

Are you on holiday just now? I am finding the heat quite uncomfortable tonight. I have used volterol and find it quite good. xx

I am on holiday - but its not a very relaxing one! X

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