I'm really sick of my rheum team today. Went to my spec nurse appt to discover for the second time I was not on system, so I inconvenienced everyone by making them late for their rep lunch.
The nurse is nice, but both times I have seen her I have felt very rushed. I asked about my baseline results and xrays, and although she knows im a nurse, she just said everything was fine! I want to know in detail ( as I'm damned sure she would!)
She started feeling round my elbows and wrists, my hands are bad at moment but ankles and feet worse actually, and then started calculating my DAS score, which no one had explained to me. She didn't look at my knees or shoulders, every single knuckle on my both hands affected and inflamed and a little painful my wrists are agony and elbows stiff. She told me my hands and elbows looked and felt worse.
She then announced as my CRP was 0 my DAS was 2.7 so technically I was in remission!! I was a bit shocked as she told me everything looked worse, then it dawned on her that she hadn't done my global assessment...WTF is a global assessment?? Where was I to pluck that number from?? I tried to think fast, as I was holding her back from lunch, and as my brain fog and fatigue are much much better but joints still ache, and I'm limited at work, I said 50. She increased it to 60 and then told me oh that's more like it, 3.7, (or something!) So moderate disease. MTX increased to 15 for 2 weeks then up to 17.5.
I have just looked up DAS scoring and even leaving out my ignored knees and OK shoulders, my hands alone if you count each joint individually brought me to 5.7 .....
And there is loads of stuff on internet that DAS not a suitable tool for PsA (if that's what this is) as feet and spine not considered though likely to be involved.
I know I'm being a bit pedantic now as I got my dose increased, but I just do not trust them. This is a very reputable teaching hospital and as far as I am aware it has a good rep. But I feel really worried they are vastly underestimating my joint involvement and PsA can be a furious thing.
Rant over....
I'm going to Brighton tomorrow to walk on warm sand.
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mirren
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Your "rant" sounds well justified. I would like to utilise your story in some training in the future with nurses would you mind sending me permission to do so via email?
I will Clare, I am a senior specialist nurse myself, and she knows this - it makes me really fearful for elderly or less empowered people. Thank goodness I have this site, I would be going crazy thinking I was wrong or imagining it all if I hadn't found here.
Jackie
Hi Mirren. I've never yet had a specialist nurse so can't compare but I think you should set your bench mark by the standards you set with yourself and your clients - which are very high of course. Not being explained the global assessment score is daft and the whole part about feet doesn't apply to the DAS for PsE either as feet and ankles are included I believe. It sounds like a right hotch potch of an appointment to me, entirely rant worthy, and I'm hoping but not expecting to fare better tomorrow in the brave new world of rheumatology than you have. X
I hope you will get someone great its all the 'presuming' that's annoying me, and not completing a full assessment, not counting all my knuckles, it felt like lip service to an assessment ,- akin to making up someone's observations on a ward cos you can't be bothered to look for the BP machine.... My heart rate was 115 when I got my BP done on dinamap- the wee student made a show of checking it manually and wrote 90. It was 115. I checked. I despair sometimes.
I'm afraid this tarries with all my NHS experiences recently although I'm a great believer in improvement so will keep trying to help things get better where possible.
Can't believe she said you must be in remission - surely a rheumatology nurse must have seen people whose bloods don't correspond with their other signs or symptoms? Hoping the hike in MTX helps you a lot although it's still early days of course. X
again I can empathise here - my GP checked my blood pressure on the automatic monitor and it was 165/90, so she repeated it on the manual one and got it down as 135/85, and that was what she recorded. I know from checking myself at home that its often up in the 160's, even when I am sitting calmly and not stressed, but so far the doctor has refused to accept my home readings and always manages to read it within the normal range.
So sorry you had a less than positive appointment Jackie. No matter what time of day it is or if they have a rep lunch or not nobody should feel rushed, we look forward (!) to such appointments even if we're considered a nuisance! We may be just one more patient to them but we deserve our time with them so don't blame you for feeling as you do. That's something else, I don't understand why we see nurses so regularly, if they're so rushed maybe it would be a better plan for Rheumys to see us! Concerns me somewhat that you suddenly jumped from remission to moderate by including the omitted global score... & then to change your consideration, what?!! I'd never had to score myself previously & on the day I see my Rheumy/nurse & need to score myself I may be better than a couple of days before but no, it's based on how you feel that day. How can that be a good indication of our overall health or a correct interpretation of how well or not we're controlled?
I've never considered the DAS 28 point system a good indication of "regular" RD having experienced the original DAS 44 points scoring system! My feet were always included previously but as they're not included in the DAS 28 my Rheumy's "hands are tied" so she couldn't examine them which has resulted in real problems. If they had been maybe my score would have been higher & my meds amended or adjusted to limit the damage which has been caused grrr.
Unfortunately Rheumatology departments do have a bad reputation generally & it sounds like even in the case of teaching hospitals the generalisation holds true. That said my last hospital was a University hospital & was excellent. Unfortunately it wasn't in the UK!
I am really proud of my hospital, i have worked there since 2002 and its extremely busy very big, bang city centre so poverty ridden area, but despite cuts and problems, the culture is generally very good. I get the feeling their hackles are up because i wouldn't wait twelve weeks for an appt and now in expecting to be given answers and prognoses.. How very dare me!!
I share your frustration, both with health professionals who don't want to see you as an intelligent and equal partner in your own care, and with health professionals who insist on using RA disease activity scoring for spondyloarthritis. I got around the latter by doing an online BASDAI and BASFI (the ankylosing spondylitis disease activity score and functional assessment) before my appointments, printing it out, and then presenting it to the doctor when I saw them, just to make sure I did have the appropriate scoring tool used and in my file. I'm not sure if you use the BASDAI for PsA or not? You might want to try it and see if it gives you a more realistic score for the way you feel.
Thank you! This is all new to me, and i was a bit taken aback to be assessed as RhA when pretty certain i have PsA, and with neck and sacral stiffness a real problem, i really don't want it ignored. I will look those up!
Since when was DAS used for PsA?? I do not believe it should be. It is used when gauging eligibility for biologic therapy for RA patients as well as a measure of disease activity. I have PsA and it has never been applied to me for any reason, certainly not when preparing the application for a bio which is when you'd imagine it would come into its own if it was in any way, shape or form applicable to PsA.
And bloods are notoriously unreliable indicators with PsA. There are 2 centres of excellence for PsA in England, one in Leeds, another in Bath. You could get a referral to either or go private to speed things up. Once upon a time I'd have considered travelling, second opinions etc. to be extreme measures ... these days, given all the things I've heard (and experienced too) about sheer incompetence and penny-pinching in rheumatology I'd go just about anywhere to get a really expert opinion and have started to see such things as par for the course unless you get lucky with a great rheumy dept. from the off. And they do exist ... my rheumy runs a very tight ship in a hospital that otherwise does not have the best reputation .... it can work the other way round, I fear.
It is used to push people through clinics quickly or hand them off to inexperienced junior staff. It allows doctors to be lazy, not examine patients thoroughly and not take accurate histories. It doesn't include the feet - huge omission - and it doesn't include disease activity in the neck - the one aspect of this hideous disease that can cause sudden death.
I have been told by nursing staff that my old rheumatologist deliberately omitted the global assessment part of it because including that number 'made everybody's scores too high.'
At my last appointment I was told that, since the swelling I have in my finger joints (which was always 'not enough' to include in the score) has been replaced by solid bony overgrowth, the state of those joints will no longer be able to influence my DAS. Talk about twisting things to fit!
Enjoy the beach & make sure you keep an eye on everything your hospital team is doing.
I have heard similar things to what Postle is saying about large teaching hospitals - it doesn't matter how excellent their reputation for most things - rheumatology is often out on its own as poor relation. It doesn't often attract the endowment funds other specialisms do because Rheumatic diseases aren't directly life threatening and rheumatology is normally an area starved of resources in most hospitals apart from the few flagship ones.
When we were thinking hard about whereabouts to relocate in Scotland we chose this area because, although the hospital isn't huge and certainly doesn't have stars for good hygiene or general medicine - it does have this pioneering rheumatology centre which my wonderful podiatrist tipped me off about. We could have gone for the much larger, famous, highly reputable, large teaching hospital that's much closer to where we are staying and is one of the UK's best hospitals according to reports just out. But I checked out rheumatology there and didn't hear good things. And even if you head for the top - the really celebrated rheumatologists often travel and give talks in far away places so you might end up under a succession of registrars. Tx
I still feel a bit of a novice, and that makes you falter a little when you are sitting with a supposed specialist, Postle as always great advice, i will persevere until my 3 month appt where i am supposed to see a doctor, maybe even a consultant! I will be asking why i am being treated as a seronegative inflamm arthritis when all the evidence (family hx, dip involvement, spondylitis and neg bloods) points to PsA and that's what first doctor said i had. My hands and wrists are changing fast. My little finger on my left hand is pulling away, my forearms and wrists are thinner, my left wrist flexion is very reduced. Im left handed, this is hugely important to my ability to work, and my ability to work is what this feckoff government are supposed to be ensuring!
Given what you've said about symptoms then I'm not sure you should wait until 3 months to tell your rheumy team. If I were in your position I would be writing a letter (old fashioned paper one that can't be deleted) to the named consultant to flag up your concerns and alert them to you wanting to discuss this diagnosis at your scheduled appointment. Very politely of course, and withthe aim of making the best use of the appointment time etc etc. But you need to show you mean business.
It's sad it has to be this way, but all rheumy teams seem so stretched that unless you yell loudly they seem to work on assumptions, and even worse on assumptions that everything's sort of fine!
I adore my consultant and am super happy with my nurse who is very efficient, and wish everyone had the same. However, it took a while for them to treat me like a serious adult human being who was an equal participant in managing my RA. I did have to do a bit of standing my ground to get there, and doing things like ignoring signals that my appointment time was up but sitting put and politely repeating my questions.
Re DAS, my rheumy team use it as a guide rather than the end point, and do look at my feet if I ask them to, so its limitations don't really get to me and I'm not in the market to be assessed for biologics so a point or two either way doesn't matter. however, research I've read shows that using DAS 28 rather than 44 doesn't make any statistically significant difference. Which is of course fine, unless you happen to be among the group that fall into this non-statistical limbo land.
Yep, its all so mechanical, one size fits all, and she was so emphatic! She keeps going on about morning stiffness. I'm not going to say I have it when I don't - I'm always stiff. I'm stiff trying to turn in bed, I can't open doors or pick up paper, or spoon coffee into the cafetiere at work, people are starting to automatically take things off me so I don't drop them!
I don't want RhA or PsA or spondylits or whatever this is, but I want to be assessed for the right disease process .... Despite the convoluted route though, I got what I think I needed, an increase to 15mg mtx for 2 weeks then 17.5 after that and see my nurse 2 weeks later - so mid Oct approx. I SHOULD be due to see a doctor end October by my calculation but no mention so far .... Watch this space.
If you know when you are due an appointment ring the department to check as I have been missed off before and I now have had my appointment cancelled with no sign of a new one. Just had to speak to nurse over phone as I am having problems with my drugs. If you don't push you don't get anywhere it seems, I think there is a shortage of rhumy doctors as I have yet to meet the one I'm under, instead I have seen different locums who send out interesting letters for my drugs.
I don't trust the DAS score, the consultants I see (different each time) look at one or two joints, sometimes ask how do I feel on a scale of 1-100 to which I feel like saying something like 89.73 recurring, they don't examine all my joints included in the DAS test, and yet when the letter arrives they've made various assumptions about me, which doesn't reflect the way my RA is progressing. I sometimes think seeing consultants is a complete waste of time, they only have a small arsenal of drugs to prescribe (most don't work for me or I can't tolerate them) and they really don't know what to suggest so make things up to tick the boxes that they've seen me and, everything is jogging along ok. Last week, the trainee doctor (ST3) wanted to look at my ankles, I can't get shoes & socks off (hip replacements & fused spine) so he had a go at one ankle, couldn't get sock off my fused ankle and gave up!
You know when your Rheumy palpates your finger joints to check for any tenderness? This forms part of the DAS 28 examination. This explains fully nras.org.uk/the-das28-score
Thankyou I do know what this is but I'd no idea,, this was what it was called. I will now ask about this at each appointment, even though I have had rd for 12 years nobody has mentioned this to me I don't think? But memory so bad they could have. X
You're welcome. My Rheumy always tells me what my score is once she's calculated it. I'm also copied in on the report back to my GP which of course it's included in so maybe you could ask if you could be with yours if you aren't?
Hello Mirren, I had a similar experience with a sp nurse a few weeks ago. I've had RA now for 7 years and assumed I'd see my usual nurse who I've known since 2008. However I was seen by a relatively new nurse to the hospital although not to Rhumatology. She hadn't got my notes, but knew me from me having 4weekly infusions. She didn't do my DAS just touched a few joints on my hand and when I told her how I'd been feeling she just shrugged and said that's RA. I told her I was thinking of applying for PIP and she said 'what's that'! I She said she would find out about it but I knew then I just had to leave. I thought of complaining but as I'm there every 4weeks I decided to leave it but it was very upsetting and I still can't look her in the eye. I'm going to make sure who I will be seeing next time before I go. I hope you have a better experience on your next appointment. Best wishes Hilary
Sorry I missed this Hilary, I can imagine that was upsetting... I'm going to see my GP nurse practiitioner today cos need my ears checked and script for pain meds, and going to ask about occ therapist podiatrist as tbh my GP nurses have been so much nicer than my rheum spec nurse, so fingers crossed.
Thanks mirren, I too find all at my GP surgery more helpful than Rhumatology at the hospital. I have been seeing Occupational Health and the lady I saw there was the most helpful, gave me good advice and was very understanding. She told me why things are the way they are instead of saying that's just RA which is far more acceptable. So I would definitely ask to be referred. I saw a podiatrist whose main interest is RA, he was very good.
So good luck with it all, my Rhumatologist referred me to occ hlth but my GP made the referral to podiatry.
The nurse practitioner I saw today was very nice, gave me a MTX script (cos the rheum nurse didnt give me enough to last until i go back!) More pain killers and cyclizine cos I've felt a bit sick on Mondays since I went up to 17.5mg. She couldn't see any inflammation in my ears and thinks the deafness is coming off my jaw inflammation. My ears feel full and muffled like I have been in a swimming pool, not quite as bad as on a plane... I completely forgot to ask about occ therapy or podiatry though!
Have you been back since to your clinic? Did you get to see your nice nurse?
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