If I had a disease that was destroying patches of skin I'd expect doctors to keep a very close eye on its progression. But with RA the actual scene of the crime - the joints - gets very little scrutiny, in my case anyway. My rheumy does examine my joints sometimes, but not always and he's very reluctant to give me x-rays or scans.
The more I learn about ESR and other indicators of disease activity, the more I realise that they are quite a blunt instrument. I know that this disease is systemic and affects people in a variety of ways but for a lot of us it's the joints that RA really has it in for. I've experienced various levels of pain, swelling and stiffness in some of the joints it has damaged but it has also damaged some with very few telltale signs.
My rheumy seems to use x-rays to confirm what has already happened. As I understand it, ultrasound scans are better at showing inflammation in joints i.e. showing what IS happening.
Biologics were meant to be on the agenda at my next appointment in a couple of weeks if my DAS was still high. But my ESR recently went from 40 to 12 in two weeks, now it's 15 ...... some days I'm very feeble & stiff, others much more limber & energetic ..... still have quite a few swollen joints but the worse ones, my knees, have gone down a fair bit. I really don't see how my rheumy can assess my disease activity with all this randomness going on.
The one main thing that concerns me is the degree to which my joints are under attack. I don't want Biologics if DMARDs can do the job. I think that the only way to see if the Mtx / Sulfa combo is working is ultrasound or MRI. Does anyone else find that their rheumy is stingy with the imaging? Any thoughts as to why this is? If it's £ then maybe I can do a deal: I'll happily stay on the cheap old DMARDs if he can show me that they are protecting my joints.
Thanks all! Just writing this has helped me decide on my strategy! Luce xx
This is an interesting question, pondered it myself. My consultant doesn't use imaging much, even though the diagnosis was confirmed by me having an MRI of my foot/ankle.
I don't think it's NHS stinginess, though. I see him privately as well as in the NHS, and my insurance covers any amount of imaging, no limits at all. During a private consultation, having had the same thoughts as you, I asked about having more ultrasound, MRIs or xrays because it was freely available but he shook his head and said it wasn't necessary or worthwhile.
The images I've had were the first MRI, an xray of my knees when they started being really troublesome (to look for OA or Baker's cysts), an xray of my hip during an episode of acute synovitis to look for a fracture and an MRI of my neck when it was so awful he thought there might have been an abscess. So the only time imaging has been used to look for RA and its effects was the very first one, since then it's been to rule out other conditions.
I suppose holding back on the imaging is justified while waiting to see if the drugs prove effective. And then if there are consistently convincing signs that the drugs are slowing down disease progression there's no great need either I suppose. But if the overall picture is confusing I just can't see any justification for not looking at what's happening. x
Your question reminds me of how much I love my rheumy....(still haven't decided about switching hospitals). At my last appt with her a few months ago I posed a similar question about how I could be sure that the drugs were doing their job when I still had intermittent pain/ mini flares and the occasional very, very nasty days. So, she sent me off for a new set of hand/foot x-rays and said she'd compare them with previous ones and write to me. And she did! Got the letter a couple of weeks ago saying no huge progression, thankfully. I have also previously had MRI to look at my spine (conclusion degenerating discs not spondy/RA), and on knees (since have been repaired & polished), and have had ultrasound a few times to look at my feet. The podiatrist also has a portable ultrasound, which he uses quite a lot to see how my toes are getting on. So sounds like it is, as ever, down to variations in local practices. But if you don't ask you don't get....as she probably wouldn't have proposed more x-rays if I hadn't raised it. Luckily she seems to respond well to my (polite) persistence in discussing how I am. MRI is v expensive and, depending on what facilities your hospital has, priority might go to other patients. But ultrasound is less pricey, and less invasive, so should be more easily available? I think rheumys forget sometimes that we need reassurance in ways other than their wise words... Px
Glad to hear that progression in your hands & feet is slow Polly. I am interested to hear that your knees have been polished - this is a new one on me - can you see your reflection in them now?
My knees have been x-rayed a few times but there seems to be a reluctance to get images of other bits. I have been like a broken record in requesting images of hands & feet..... my rheumy resists but I saw the nurse for the first time at my last appointment & she readily agreed. Those x-rays (I'm sure they must have an ultrasound machine somewhere in that hospital!) showed damage to both big toes & both thumbs.
I have had to be very persistent in asking for things - I think I'd still be languishing on 15 mg of Mtx if I hadn't questioned my treatment quite assertively - & hearing that your rheumy is quite proactive with the pictures makes me more determined to ask for ultrasound images of a fair few bits and pieces.
So far I've had no lasting signs that the drugs are working. I think images are the only way to decide whether they are or not. x
HI, At the start I had the usual x-rays that everyone has, since then I have had x-ray of the neck, ultra sound scan on the right ankle followed by MRI, this was before I started on biologics. This year as I am on biologics therefore should have minimal pain, but the hips are giving me real jip, to the extend it feels as though my skeleton is going to collapse, I have had a ultra sound scan completed by the consultant and am due to have an MRI next Sunday.
My problem is that it started in the right hip which has lessoned and the left hip is the one that giving me real bug trouble and yet they are only doing the right one! Am hoping that the screening will show the left but who knows.
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It does seem to be a case of shifting sands all the time with inflammatory arthritis - no sooner do you arrange something for one problem than it either gets less pressing or something more urgent comes up. Have you got time to phone up and ask for an MRI of both hips?
Sorry to hear that your hips are giving you such jip, Georje. Really hope the MRI helps things along & that the Biologics come up trumps. x
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I did ask the nurse to do this, apparently as i had the ultra in the right then have to have the mri in same side. Took it to mean like biologics have to go through certain criteria. Oh well back to the drawing board.
To be fair, its only in fairly recent years that enough research has been done on whether ultrasounds can accurately and reliably measure inflammation, and whether the same ultrasound examination would get very similar results if interpreted by different doctors. Until a technique or a treatment does get enough research, its difficult for doctors to justify using it regularly, and yet, because xrays do carry cumulative radiation exposure most doctors have already decided to minimise the number of xrays they will do, and limit it to around the time of diagnosis, or if they really need to see the extent of damage for some other reason (like if you are likely to have surgery) - rather than using xrays to monitor disease status.
I would hope that now more doctors will start using ultrasound a lot more - not just for diagnosis, but for monitoring disease process. I have heard of some rheumatologists who have a portable machine in their offices. Maybe its something we can all push on a bit by asking "why aren't you doing ultrasounds to see what is going on in my joints?", and if they seem reluctant say "but itsn't it meant to be a very good way of seeing exactly where inflammation is?"
Woolly, as far as your treatment goes, then I think its really easily justified for you to ask your rheumatologist to do ultrasounds so that you and he really both do understand exactly what state your joints are in as far as damage goes , and so that it can inform a decision about DMARDs vs biologics.
I personally wouldn't ask for xrays or accept them unless I was sure they were the best type of imaging for the job, just because of the cumulative radiation exposure - I would rather save up my lifetime xray "allowance" for if I needed a CT scan (which has a very heavy radiation load) for something major, or something like that. But, xrays do show up some stuff well, and thats why its a very old technique that is still being used when we do have other techniques like MRI and ultrasound.
I agree that CT scans should be reserved for real urgent need as they do give you a large burst of radiation. But focused X-rays of hands and feet every couple of years don't add that much to your radiation load especially compared to what you get on a daily basis from just living in the world, so I don't get too alarmist about them as I find the reassurance they provide is worth it. They give you extra 10's of little whasits (i forget the term for radiation) as against a thousand or so a year naturally, and maybe 10-15,000 from CT scan. Even a chest X-ray doesn't add more than about a 100. I think it's more important to avoid too many x-rays of the more sensitive spots, like thyroid and uterus. Or push for MRI which doesn't give you any radiation, although perhaps needs to be balanced against the stuff they inject you with and the cost to the NHS.
I have totted up quite a few x-rays - I have a lot of dental x-rays & am quite accident prone - & I agree that it's best to be cautious. I have always asked for ultrasounds specifically but have never had one. And I really do phrase my requests clearly & politely and have even attempted to be charming which my husband seems to consider an hilarious spectacle.
I might ditch the charm offensive but it's helpful to hear that others think I'm justified in wanting to know what's going on in my joints at this juncture. Thanks for reinforcing my determination earthwitch. x
I always wondered why they don't do a cumulative total of xrays as part of our medical records. Its really easy to do. If xray technicians have to be monitored all the time for it, why don't they consider the patients? It could be as simple as having a page permanently in your file, and every time you have an xray, the technician adds it onto the list.
As far as knowing whats going on, how about some nice pointed questions like "if ESR and CRP are such broad-brush and inaccurate ways of identifying joint inflammation levels, how DO you know what is going on with me if you don't do something like ultrasounds regularly?"
That's a good point about x-rays .... & thanks, that question might well be one to memorise! Of course he might argue that they are not inaccurate ...
This is interesting. I have to warn Earthwitch not to expect ultrasounds at our hospital though. When I had my trans abdominal scan I asked the young lass who was operating it if joints were ever scanned by ultrasound here. She liked incredulous and said no - there would never be enough people requiring this for staff to keep their practice up to scratch here and actually, even in Aberdeen she had never heard of her fellow students being trained to use ultrasound for muscoskelital conditions at all. I told her that I have read of people on this site who have been diagnosed using this method and she said she was amazed as had really never come across this - but it certainly wouldn't be used up here in this way.
Both my x-rays have been of my hands only. The Radiographer commented on how my hands looked more full of OA than RA - didn't "look like RA hands at all" and that was supposed to reassure me that it would be fine to come off MTX! But the GP who requested these wrote for her to look for "RA erosion as she is thinking of stoping methotrexate" and the radiographer explained that they couldn't look at my wrists or any other condition or drifting and hand changes because its like a prescription and they can only respond to precisely what has been requested. So she told me there were changes in 2 years but as they weren't erosion she would not be able to mention then in her report.I told me GP about this but he just said that the reason there is no sign of erosion is because I'm on MTX so its all a bit unclear but basically its preventive medicine at its most blunt I feel and sledgehammers cracking nuts spring to mind (ouch?!). I have never had my knees, ankles or feet x-rayed even though the RA started in my knees and I am sore getting up from sitting and very ginger on stairs again just now. But then some of my worse swelling problems have been in my tendons and yet they don't count for anything re DAS?
I agree you should push to get imaging - especially scans which are harmless. Why does RA always take low priority compared to other diseases re MRI and ultrasound scans? The whole thing is, as your rightly point out, quite bonkers! Tilda x
Thats really interesting, and yet another example of how we get a very much watered down service in Orkney. If its too hard to keep local staff trained up, then why can't they bring someone up from Aberdeen to do a few days "ultrasound clinic"? Or if it all goes onto computer anyway, why can't they just send a video of the scan away to a competent person? Or supply a small portable unit for the rheumatologist to use themselves in the clinic (as some do already). I also think only commenting on what was specifically asked is a real cop-out too - they should be competent enough to both observe and note other significant things, and if the clinical particulars say "RA" then they should comment on everything that could possibly relate to proving or disproving RA, not just erosions. I am also still fairly annoyed that so much of the reporting of imaging in Orkney is not actually done initially by doctors. Even if Docs check a report, it still means they won't have had as good an examination as if it was a doctor reporting straight off. I've also never had a musculoskeletal radiologist look at any of my films, and this is a good practice recommendation for any rheumatology imaging.
If NHS Orkney wants to really save money, the easiest way would be for no local reporting at all, but send good quality electronic files over to India and get them reported there. They have some pretty skilled doctors over there, and it could be done overnight at a fraction of the cost, and with ten times the information being sent back. When I compare the one line reports from Orkney, with a full page report from New Zealand of the same type of imaging, it just seems we are really being shortchanged in the UK, and in particular in Orkney.
And I know you didn't say bonkers but that seems to be the gist - also sorry for misspelling etc but I'm using my iPhone as knees can't face negotiating stairs to write on my laptop! X
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I'm fine with bonkers! Bonkers bonkers bonkers. The bottom line is that being an overly patient patient is to risk slowly or not so slowly getting crippled by this disease quite unnecessarily. I've always thought that the risk of disability is so, so serious but seems to be taken lightly in rheumatology circles compared to just about any other field. x
I posted about this recently and my rheumy feels imaging is pointless because "we all ready know you have RA". Well, yes we do but like you, I'd like to know if I have erosions and if my medication is working well. I have Bupa cover and have had MRI scans privately as well as a couple of ultrasounds all of which have revealed erosions. When I've taken the reports to my rheumy, she's said "yes, well you do have RA" but my point is; imaging can show erosions and/or inflammation which she can't see (unless you have a rheumy with x-ray vision! ;)) when examining joints! Both of which are very important things to know, especially in joints which are hard to examine. Also, they can rule out other injuries/conditions causing pain. I could barely bend my foot or ankle, had an MRI, it revealed a bone abnormality (not RA related) and I had an operation and I can now bend my foot and drive!
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That phrase about knowing already that you have RA sounds so complacent to me & akin to saying that erosions are inevitable. Well some might be because of how variable RA is & how differently different people respond to drugs. But surely rheumies should be pulling out all the stops to prevent people's bones disintegrating? And using all the tools at their disposal is part of that, especially as ultrasound isn't mega expensive. Some of the damage I've sustained is due in part to doctors sitting on their hands. x
I get a another kind of brush off about imaging - because I have once had a certain xray or MRI some years ago, it apparently means I don't ever need to have the same again, according to my rheumatologist. Don't they know that things change?
I agree, it does feel like they say it's akin to being inevitable which is ironic because at diagnosis, they all went to great lengths to tell me that earlier diagnosis and modern medicines means that they see much fewer patients with erosions.
This is such a complex journey and no two people are the same. I feel for you that damage was sustained while doctors basically twiddled their thumbs. It's not easy. x
I wonder whether rheumy's are so pleased to have some drugs that do something, as opposed to pre-history when they could only dole out aspirin, that they consider things that upset us hugely as "minor" erosions? There must be some reason why yours is sooo laid back? Is he of mature years (ie able to remember pre-the new drugs)? I sustained damage early on, but that was part due to me not pushing GP hard enough to refer me, and then delays in getting started on drugs. I wouldn't call my rheumy pro-active, but she is at least responsive to being gently encouraged toward action. Px. (And not sure they do polishing any more, but surgeon proudly showed me before & after photos of the bits inside my knee, and pointed to the smooth surfaces he had created, and artistic curves. I think if you looked closely you might find his signature in a small corner)
My rheumy is quite young. I suppose I could have pushed GP harder to refer me but it took me a while to twig that I had RA whereas the doctors should have been more aware. Whilst I've successfully pushed for some things I do think I've unwittingly colluded in the laid back approach at times. I adjusted to the minor (?) level of disability that I have way too readily I think ..... but there is huge pressure on all of us to be good-natured & stoical ..... how to summon up & channel the anger & hurt at the right time? That's the challenge. And then there's the effect of seeing others worse off than me in the waiting room .... sometimes my husband comes with me to appointments & he reckons I play down my illness - well I reckon that after an hour or so seeing people trembling with pain it's hard not to.
But at this point I need to really push it I know. And if that means seeing another rheumy that's an option too. x
Yes it does sound like you have been too laid back but as you say why should it be up to you to always have to push? When I read what you and Polly have been through I feel the equivalent of the way you feel about those you see trembling with pain in the waiting room. I often feel I push too much by seeing a GP once a month and the occasional email to the rheumy via physio - and once a year visits to the rheumy - and usually worry I'm over medicated. Having seen no erosion at all I am not sure why my lot are so insistent on me staying on MTX. Not being sufficiently scared of pain means that I'm too focused on dreading MTX each week. I do have sore joints if I press them and my knees hurt a little when I go up and down stairs, wrists can't weight bear fully and fingers are usually stiff with a few knuckles constantly a bit swollen. But most often I've told myself that this is just ageing and a bit of mild RA and nothing that warrants a foul taste or 2 days a week of nausea. But if I was in your shoes I would be growling and fierce as a tiger with young rheumy chap! Xxx
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It's hard to get it right, very hard. I do seem to get a lot of time at appointments & that's not because rheumy & I are having a good old laugh but because I do demand answers & try to stay put until I'm properly set up for the next 3 months. I can definitely see how I could have done more for myself ... but that's without taking account of the learning curve we're all on. And also I think rheumys are probably under a lot of pressure themselves to keep prescribing, imaging etc. within budgets and blood & stones comes to mind sometimes. I've got just over a week to practice my tiger impression! x
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Also, are you over medicated or is your lack of erosions the result of appropriate treatment? It's a bit of brain teaser, I can see that.
This is the voice of your auntie Ethel speaking (ie the equivalent of whoever told you off for your own good as a child). Your lot are insistent on you staying on MTX because it's a disease MODIFIER. You're not supposed to have erosions when you're taking it....! Grrrrr. Px
Brain teaser is an understatement! I have decided to keep going down on MTX until I hit a place where the side effects are sufficiently tolerable to balance the RA. I'm hoping it will be 12.5 if injectable. This same low dose left me flaring on the tablets but I do really believe the injections are a different kettle of fish and hope its enough to strike the right balance.
And if I flare then I will reconsider but so far my RA hasn't really worked like that. Its been more a case of ESR creeping up from raised to soaring and pins and needles or deep heat or tendonitis. And as physio, GP and consultant all seem to think these represent active RA while at the same time telling me that I'm not to worry about the systemic and weird stuff but just focus on lack of pain - I am going with the latter thinking for a while. There will be moments of panic on route I know but I'll be glad for a break from being a tigress I feel - you take over where I left off Luce because I'm sure you need to more. Xx
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Hang on ..... I've just remembered that actually I did play a part in bringing my rheumy round to the idea of biologics in the first place & that was hard work. I'm really no shrinking violet. And now the reason I want imaging is so that I can stay on DMARDs with confidence if at all possible. I love the way these posts morph but I'm just reminding myself of what I need to be fierce about!
Grrr away all you like Pollyanna but I'm too busy relishing the lack of sour rusty mouth to feel penitent! There have to be some advantages to all the older generation being dead and gone for me now! And I'm still injecting the wretched stuff aren't I?! Ooh and I slugged down a large dram of son's Jack Daniels tonight too so am emboldened - but also mindful that you can't catch me for a whack on bum with a hairbrush like ... Well actually she was called Ethel as it happens I kid you not! Xx
Ps Sorry for hijacking your blog Luce. But a woman has to find something to do on Saturday night while husband watches Aljazeera news! X
Yuck, Jack Daniels is my equivalent of sour rusty mouth. Proper whiskey every time for me please (not a spelling mistake, just married to an Irishman so no whisky in our house). I just get nervous that emboldened by alcohol you'll forget the negatives of your drug holiday. Hope auntie Ethel was a nice auntie overall tho', as so bizarre I hijacked her name. Px
Isn't it?' She was my grandmother's companion / housekeeper / nanny and just known as Nan - but basically I lost both grandparents early in life so she was my adopted grandmother for all intensive purposes. She did often brandish hairbrush and tell me frequently that she would use it on my backside if I was wicked (and wicked would be apt in this context you'll be pleased to learn!) but never carried out her threat. This is why I pay no heed to your mutterings along the same lines I guess.
Re taste buds and JD whiskey - mine have gone to dull since RA/ MTX so no point in drinking the malt for me! It hit the spot and that's what counts. Sobering up now though - I love whisky (Scots blood me!) x
Its switched from Aljazeera to the Beachboys live at knebworth now. Boys are out at some drunken rammy so husband fevers he may have to get in the car in the early hours and pick them up. Whisky is proving very useful!
Yes glad you've cemented your thoughts more. I asked for x-rays of hands before coming off MTX for a month for same kind of reason. It didn't really help me because lack of erosion suddenly made me feel more reckless about dumping DMARDs for a month. I think you need to ask for the reason ultrasounds and x-rays are do disregarded. It is possible that there's a good reason but after reading Andrew NRAS's blog about EULAR findings that rheumatology services in UK are very poor compared to other European countries I think probably not. X
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I could really fancy a glass of whisky. Or whiskey - not fussed which. x
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I thought your x-rays helped because if you were going to take that leap, which you wanted to do, you had to feel reckless? And my reasoning is almost the opposite - I have to feel safe in order to stay on DMARDs.
However, I wouldn't be at all surprised if, what with ESR going down etc., rheumy won't countenance Biologics (even though he did say he'd use clinical judgement more than DAS) .... & then I'd still need imaging because if disease IS still chomping on joints then they've just got to give me Biologics! x
That's me youthful without being puerile. I was a punk with a bath mat which had "I hate f*ing punk" written on with nail varnish and attached to my old leather drain pipes. Beachboys look quaint to me but anything would! X
Well it certainly doesn't fill me with despair as sour milk with rust always does and I just had a few wonderful hours of fuzziness so I'm a fan of whisky/whiskey/ - I feel its medicinal. X
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Well I've got a fair few things out of this thread not least of which is that I shall be purchasing a bottle of that medicinal drink. Wine's too flim flam these days.) x
Great stuff - go for an Orkney brew maybe - Highland Park or Scapa? Then we can drink our medicine in tandem and compare notes in future blogs. But don't blame me if the liver protests please!
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X-rays & steroids…not today thanks!
Pretty anxious on neck X-ray 
Chest X-ray-inflammation
If there have been no x-rays or scans done for three years, is it possible for a doc to say that there is no RA erosion present today?
