DAS 28 and the examination of joints

Mat48
Mat48 Member Posts: 1,161
edited 29. Jun 2013, 08:39 in Living with Arthritis archive
I am to have my DAS assessed in a month's time and was trying to work it out a bit for myself. If I squeeze my own joints, bearing in mind that my hands aren't too good at squeezing - I find quite a lot of my joints are tender if I prod or squeeze them hard enough. Is this normal tenderness that I would feel regardless of RA or is it just because I have RA? I also have some OA too so how would the examination of joints differ?

And if someone really wants to qualify for biologics (which I don't) then surely they could react to pressure in joint areas by flinching or wincing simply to increase the score if they have reasonable acting skills? I have only one knuckle visibly raised and am sore and stiff rather than in pain presently.
If you get lemons, make lemonade

Comments

  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    I agree with you entirely about not seeing the point. Sorry I said it now as it was a bit of a red herring and I personally don't want to take any of these drugs at all either - but I was just wondering out loud how they gauge as pain and tenderness are so subjective. Last time she watched my face and every joint made me flinch when squeezed and prodded, but they don't hurt much generally. Or perhaps I've just got used to low level ache and pain so am only aware of it when it screams at me?

    I know of someone who is desperate to try the biologics but she hasn't yet even been diagnosed.

    I realise joint tenderness is only one part of DAS but I rarely show visible swelling or heat apart from in my knuckles - which don't have a lot of tenderness in these days. And some of my worst swelling and heat has been around the tendon sheaths and in soft tissue and the physio who does this DAS doesn't check for this I think. I wish they used ultrasound to detect inflammation for this purpose where I live, but they don't.
    If you get lemons, make lemonade
  • barbara12
    barbara12 Member Posts: 21,130
    edited 30. Nov -1, 00:00
    Mat sorry I cant help,but I do want to wish you well with whatever treatment you get X
    Love
    Barbara
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks Barbara. I seem to be managing quite well with the lower dose of Metoject so am hoping this is seen as enough for me, because I appear to be allergic to many drugs so would much rather not have to try out more. I know this can't be helped but nonetheless it makes me feel guilty, as though I'm a quitter. But after 18 months of methotrexate, I know rationally that I'm not.
    If you get lemons, make lemonade
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    She is acting as the rheumatology service here so has been trained up by my consultant who only comes here every four months. This is why I'm not so confident - because she won't be nearly as experienced as he is at examining joints for inflammation. I will see him a week afterwards and he will use my DAS to decide whether I meet the criteria for biologics apparently.
    If you get lemons, make lemonade
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Yes I am. I won't have seen him for over a year but my GP keeps in touch with him about me.
    If you get lemons, make lemonade
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Wot is a DAS Score? I think my rheumy really did concentrate far too much on fibromyalgia :(

    I wish you well with it all Mat, it's so stressful not knowing their thought processes. I know I'm struggling with it at the moment. Please keep us posted.x
    Healing Hugs
    Debbie.x
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Mat - as the DAS involved blood results, tender joints, swollen joints and how you feel you out of 10, even if you said all your joints were tender, I'm not sure how much sway it would have overall. Not sure if I'm explaining myself very well!
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    This post got me thinking, so I used an online calculator and entered:

    0 for swollen joints
    28 for tender joints
    0 for CRP/ESR
    10 for patient global health

    It equals 5.32 which in most areas would qualify you for biologics. However, I recall my rheumy saying that they don't just use the DAS and within that, they'll look at the bigger picture e.g. how many joints are visibly red and swollen - this was when my DAS was about 4.5 but it's irrelevant because I now qualify for biologics.
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    My crp was 38 last week but I've got an active chest infection its normally about 12/15 ... I've never heard of this score thingy b4 :? Most of my levels were messed up tho.lol I didn't get them done this week it seems so pointless :( xxx
    Healing Hugs
    Debbie.x
  • mike26
    mike26 Member Posts: 416
    edited 30. Nov -1, 00:00
    hi all
    debbie t the DAS28 stands for
    (disease activity score)
    28 joints for assessment activity
    ive had this done by my roomy doctor few times
    to give an idea of how my PsA severity disease activity
    is progressing.
    at the moment unfortunatly its very active.
    and for me when squeezing the joints(hands and feet)
    it was painfull to say the least :x
    mike26 :roll:
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    http://www.4s-dawn.com/DAS28/

    This might help for those with RA but I think its a bit different for PsA because of the psoriasis and different joints that can be affected - including the spine and hips? I worked mine out and this time last year it was 5.7 and now its about 4.5 so I'm not sure where this places me - but probably not high enough DAS to qualify for anti-tnfs in my area. I'm relieved but also a bit worried about this.

    It might be different in a month's time when I'm feeling the drop in dose of MTX more but my ESR is usually about 3 weeks behind the times! They don't use CRP up here but I will ask for it to be taken for my DAS.

    Most of the time I think I'm doing fine just now but then I have slight panics that the disease is just gnawing slowly away at me. Sometimes I think that people who have consistent low level pain and moderately active disease are worse off than those who have a very high DAS because they don't qualify for the biologic drugs and if they have failed or can't tolerate DMARDs at a sufficiently high dose then they are just left under medicated until things worsen sufficiently and damage is actually taking place. But most of the time I think I'm just lucky and don't need more drugs than I'm taking.
    If you get lemons, make lemonade
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Thanks for explaining it :)

    I've definately never had that done.lol I'm on Mtx oral at 30mg a week with 2 x 5mg folic acid, I tolerate it really well luckily.

    I seem to get more of the erosion from tendons/ligaments than joint damage from wot I can gather but I've only had a couple of xrays done since I was diagnosed so I'm pretty clueless :? I know the PsA had done lots of damage to the hip bone but not joint back in 07 but then I got the report for Dla & I'm riddled so I have no clue wots going on .... It seems we're in a similar boat here Mat :?

    My lower spine is affected & my neck too btw, so yeah, we do tend to get it in different places to RA.x
    Healing Hugs
    Debbie.x
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Well someone who knows a lot more than me about these things tells me that PsA affects tendons and spine much more - especially the Achilles' tendons. She is always saying that from my symptoms she thinks I have PsA but I don't have any psoriasis so I think its probably RA as the rheumy has diagnosed. Maybe RA with PsA leanings?!

    Can't believe you can tolerate 30mgs - that is a lot! But if its not working enough to stop the erosions I'm surprised they haven't put you on anti-tnf already? I don't know if I have any erosions because I've only had 2 x-rays at the request of GP, both of my hands. The radiographer told me she could see lots of changes but they didn't look like RA and she had only been asked to report on specific RA erosions. So the x-rays came back clear but I wasn't very confident about them as my hands are always tight and stiff and I have swollen knuckles always now. Also never had MRI or other x-rays done and my knees and spine are always stiff and sore just now.

    Ah well I think I've got off light compared to you Debbie apart from not tolerating MTX above 12.5mgs. X
    If you get lemons, make lemonade
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Lord no, I'm ok!! :) I think I've been really lucky so far. They can't replace my actual hip bones as it's not the joints so I'm lucky in that respect.
    At least I don't think the joints are involved but like you I had xrays at my 1st appointment n I had a couple more last year but she never told me anything ... Too fascinated by fibromyalgia :? I haven't had any scans either.

    PsA & RA were only separated in the 60's I think & it's kind of on its pattern, nodules & blood tests as well as what they're seeing as to which they diagnose (I think) so ure probably right. They'd know more than us I'd hope.Lol

    Why don't you tell ure GP wot the radiographer said? He may be able to request any additional info found on the xrays!! Just a thought.

    My immune system is very low on this dose, I've had a chest infection since the 1st week of April. I'd like to be put on something else now, wen I'm better i mean. The benefits aren't outweighing the big drop in quality of life at all :? It's my Dermatologist that has me on that dose not my rheumy, I was ok on 15mg for PsA a few years ago. Dermo won't put me anti tnf coz of the cost & I haven't 'failed' with Mtx ... I'd class this as a fail but I need them to class it as one too.

    Fingers crossed for us both :) x
    Healing Hugs
    Debbie.x
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
    Have you thought about taking a combo of dmards at slightly lower dose? Might be worth asking your rheumy if not already discussed
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Thanks for telling me all about this PsA stuff Debbie its really interesting. I don't know of anyone on this high a dose of MTX. They do say that if you take it by injection its far more effective so you could lower the dose to 15mg and actually be taking the equivalent of 25mg in oral terms. That's what a rheumy told me in January anyhow. So for you it could be 17.5mg injections and your immune system wouldn't be as compromised. I think you should say you are getting too many infections on this dose and therefore can't tolerate it at the level required for your PsA.

    It must impact on the liver and white blood cells at that dose in the long term surely? Do you see a rheumy as well as a dermo? Could you enlist their support perhaps re anti-tnfs and a lower dose MTX?

    I will ask my GP as you suggest - I see her on Monday. She's the one who sent me for x-rays and is lovely. I told my man GP what the radiographer said about me "not having RA hands" and he just commented that he would be most disappointed if I did have when he had diagnosed and referred me so early! X
    If you get lemons, make lemonade
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    I took that comment to mean your hands have got sumut but it didn't look like classic RA, did you?? I'd stick to seeing the female about ure arthritis ;)
    So you were diagnosed by ure GP, the male one?? Have you seen a rheumatologist? Sorry, I can't remember my memory is hopelessly foggy :? Was ure RF positive then? I'm a bit more confused now ... Yes easily done.Lol

    I do see a Rheumy too. She diagnosed me in early 08 after I'd seen her registrar in 07 n he'd ordered xrays n suspected PsA. She confirmed that & added OA then in 09 also diagnosed fibromyalgia too. After that it was almost as though I only had FM, the arthritises became almost incidental it seemed although she'd still give me injections. This is where I've gone wrong, I've ignored a lot :?

    I'm having weekly bloods & my lfc has been fine, I've been weekly since early April. My white count is raised but is never 'normal', actually a few of my results are always raised even wen I'm fine & well, bloods were sent to a specialist to see if I had something else underlying but I didn't so they class my raised levels as my normal now.

    I will be asking about mtx injections as that was suggested to me wen I joined this forum as a possible solution. Thanks for reminding me coz I've got to start my list!!

    It mostly impacts my quality of life coz I'm so fatigued all the time, generally unwell + in pain its just beyond a joke :? I know I've got it easier than most too which makes feel like a right baby!!

    Wow I waffle on, I'm sorry.x
    Healing Hugs
    Debbie.x
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hey don't worry about it Debbie - I waffle on a lot too! I do see a rheumy but live on an island so not very often. He diagnosed RA "as a working diagnosis but keep an open mind - things could change" 18 months ago. I can email him through my GP and yes I am sero positive - but only a low positive RF and negative for anti CCP - which apparently makes it more likely that I might have some other type of inflammatory arthritis diagnosed at some point. I have had severe eczema all my life until about five years ago when it just disappeared. Also I have had swelling and pain in my tendons and soft tissue as much as in my joints and have trouble in hips and lower back (put down to OA without being examined by a different rheumy to mine). I see mine at the start of August - first time in over a year. I half expect him to re diagnose me as having PsA without the psoriasis but we will see!

    Take care and have a good weekend. Mat x
    If you get lemons, make lemonade