imaging of joints

[girli1111]

When I was first diagnosed with RA, 15+ years ago, my hand was xrayed to give a ‘baseline’. I can’t recall having any further imaging done at the request of rheumatology , (only a knee X-ray when I had an accident). Is this standard , or do others have more regular imaging done? (UK, NHS). I’m asking as I currently have a lot of pain in multiple joints, but relatively low blood inflammation markers. I feel that damage must be happening in my joints and it frightens me to find myself feeling so physically limited all of a sudden!

[Pythagorus]

Hi G, similar to you I too had my hands x rayed about 15 years ago and at my last appointment with my consultant last month he requested another one done.I think this was because I reported that my little fingers were clicking when bending them. Not painful,but one joint slightly reddened. I havnt heard anything further and am not expecting anything to be done. Not the prettiest fingers and a small flare going on in my left hand this evening. Perhaps it would be wise to give your rheumatology helpline a call and get some advise and reassurance.

[bpeal1]

I didn’t have my hands (or anything else) x-rayed when I was diagnosed 16 years ago. I always thought x-rays weren’t particularly useful (unless there are severe erosions). If my rheumatologist isn’t sure what is going on in a particular joint she usually asks for an ultrasound scan or an MRI scan as these show up inflammation better.

My inflammation markers are never high. My rheumatologist always goes on examination of joints and symptoms to determine if I’m flaring and need a steroid injection or medication review.

[Sheila_G]

I was diagnosed 21 years ago through blood tests and I have never had an xray connected with RA. The only procedure I had was a liver biopsy to make sure I was ok taking mxt although I have never heard of anyone else having one.

[Bookworm55]

I had my knees and one hand x-rayed as part of diagnosis 7 years ago. Nothing since until my last consultation at beg of this month when my rheumatologist booked me in for hand x rays to see whether my joints are inflamed or just already damaged. She said that it’s difficult to assess them without this.

[janmary]

My inflammation markers are never high - I think there’s a research programme needed to see if theres any answer to the group of us who confuse medics by not obliging with obvious blood ‘proof’ of flare ups.

I’ve recently had hand xrays for the first time after 11 years -result described in detail my bent fingers which are obvious to the nakedeye !

[girli1111 in reply to janmary]

This is my concern, that severe damage could be happening but because my bloods look ok, my meds aren’t changed. Thank you for your reply

[LinaM]

I have not had any follow up X-rays either . Even though my hands are a lot worse. I’ve no idea why they don’t do it as they just seem to take notes just by looking at my hands … some days they look fine , others they’re like huge sausage fingers …. How can they tell what’s going on underneath all that ?

[girli1111 in reply to LinaM]

My hands don’t even look that bad, but I feel like they are inflating internally against a completely resistant skin. Same with legs, knees, elbows…. At least my back seems to behave itself! 😂

[AgedCrone in reply to LinaM]

Tbh..most joint deformities in hands turn out to be OA. They don’t look very pretty…but most don’t need any treatment ..except pain relief.

[LinaM in reply to AgedCrone]

I’m pretty sure it’s PSA that’s damaging my joints and tendons in fingers .. but as I’m not prepared to take the drugs there’s no point in chasing up tests . However it’s stupid taking X-rays for baseline if they’re never referred to again ! I’ve never had ultrasound .

[AgedCrone in reply to LinaM]

Further X-rays are taken if an experienced rheumatologist thinks further investigations are necessary …if you think you know better, maybe you need to find another doctor?

If you refuse the treatment offered by such a clinician, unless you choose to get X-rays or ultrasounds done privately….You will have to bear the consequences….or as I said you could ask for a second opinion.

Let’s face it….nobody wants to take drugs every day, but on the other hand most people don’t want to be in pain 24/7… so they take what their doctor advises. With RA there is unfortunately no one size fits all medication…so if you won’t try any of it….you are missing out on any possible relief aren’t you?

[Amnesiac3637]

X-rays don’t tend to show up problems with RA inflammation as they’re mainly designed to show anomalies in bone structure. Ultrasound is used much more now but an experienced rheumatologist knows what they’re looking and feeling for in joints and that often suffices. If you need more investigation following an examination then that’ll involve bloods and possibly MRI.

[eastbournelady]

I had baseline feet and hand x rays then nothing until i commented after 12 years no x rays for comparison ever taken, next appt i was given hand x rays assume all in order cos didnt hear anything but who knows did anyone actually look at them!!!!

[girli1111 in reply to eastbournelady]

Makes you wonder…… I think I’m going to ask for some ultrasounds to be done

[AgedCrone]

In 20+ years I have never had any joints routinely Xrayed after baseline unless I have complained or Rheumy has suspected something was going on.When I fist developed OA in my hands they were Xrayed…but I had to initiate that.

These days I would doubt any procedures are carried out routinely. So if you feel there is a problm….tell somebody in your rheumatology department. ..& see what they advise.

[girli1111 in reply to AgedCrone]

I think you’re right, I need to ask directly. I’ve been told I have moderate osteoarthritis in my knee. I’d love to know if there’s any difference between what rheumatoid bone damage looks like and what osteo looks like, I imagine there isn’t!

[AgedCrone in reply to girli1111]

Well OA & RA are two completely different diseases…& tbh what matters is how much damage a joint has ..not which type of arthritis caused it.

OA is caused by wear & tear on joints…& doesn’t usually involve other organs, wheras RA is an autoimmune condition that can affect any part of the body…so an experienced clinician would recognise the difference.

But tbh unless there is something particularly unusual diagnosed by a rheumatologist they don’t waste time in the NHS on Xrays or Ultra sounds……I have been told by my hand surgeon he could operate privately on my hands…but as I can use my hands OK…I can’t see the point of paying thousand just to make them look better…especially as .I don’t think there is any guarantee to lose the pain.

if you look at people around you, most people have some sort of osteoarthritis in their hands as they get older….and probably in their knees & hips as well.

[girli1111 in reply to AgedCrone]

Thank you, I’m aware that they are different diseases, I was first diagnosed sero positive RA aged 33 and I’m now mid 50s. I just wondered if they can differentiate between damage cause by rheumatoid disease and damage caused by wear and tear. I appreciate we all get wear and tear as we age, but I do need to have something done to relief the crazy pain I’ve been in of late. My bloods look ok, which is why I’m asking about imaging. I want to avoid further damage IF it’s being caused by rheumatoid disease that could actually be better controlled.

[AgedCrone in reply to girli1111]

Consultant rheumatologists have years of experience…both examining patients & checking their test results & these days in the NHS …there is not only a shortage of doctors & nurses…but also radiographers & other highly qualified people who carry out all these tests….in all specialties- not just rheumatology….so only if a scan is clinically necessary will one be arranged.

If your consultant felt you needed any type of investigation…I’m sure he/she would organise it….but only if they find a clinical need…not just because a patient wants to know….

Why not try to explain how you are feeling to your rheumy nurse & ask for a drug review.? But beware ….that can have its drawbacks…analgesics can make you feel like a zomby…& from personal experience I know that feeling can take a long time to go away,

But do you honestly think you would feel any better knowing that say your hip needed replacing because of damage from RA or OA? I’m sure you would just want it fixed - wouldn’t you?

.

[girli1111 in reply to AgedCrone]

I think you are missing my point, perhaps I’m not being very clear…. The only reason I want to know if damage is rheumatoid vs osteo is because rheumatoid damage ‘should’ be avoidable ‘IF’ I’m on the best combination of meds for me…. At 54 I’ve still got a lot of living to do in my body - hopefully! I have been put back on methotrexate, having had a bad reaction to sulphasalazine and then limited response to leflunomide…. I don’t just want to accept the status quo if better is possible, I don’t think that’s unreasonable. I find your implication that I’m trying to waste NHS resources rather rude actually.

[AgedCrone in reply to girli1111]

But that is where your rheumy’s expertise comes in to play..if he thought yourRA was not well enough controlled he would advise a change in your meds.

Your best bet really is to speak to your Rheumatology Nurses.

Tell them you are worried about uncontrolled RA and their. answers should put your mind at rest.

If that doesn’t help….either ask to change rheumy, or arrange a private consult …but if you are in contact with your rheumy team that really seems unnecessary.

I’m a lot older than you & have been guided 100% by my rheumy for over 20 years.,,,we have to trust somebody or we’d drive ourselves crazy.

[Amnesiac3637]

Not much, makes no real difference and it all hurts!

[girli1111 in reply to Amnesiac3637]

It makes a difference if it’s rheumatoid arthritis that could actually be better controlled

[Creakywrists]

Last winter I complained at a 6 monthly appointment that I thought that my biological (Benepali) wasn’t working as well as it had initially. My consultant thought that it could be due to osteoarthritis which I’ve had since my late 30s rather than rheumatoid. However he did arrange for my hands, wrists and knees to be x-rayed and compared to the x-rays taken after I was diagnosed. The x-rays showed changes due to rheumatoid arthritis and I’ve since been prescribed another biologic.

[dippyd09]

I’ve had RA for 30 years and have only had X-rays done if I have been having problems. They don’t want to be giving X-rays too often I would think.

[Kariss]

I was diagnosed about 15 years ago and had x rays done as part of my diagnosis. I have since had both my hands and feet x rayed several times as it’s obvious just by looking at them that my disease is progressing. I have also had a scan done on my feet. I think it’s maybe because my inflammation is not very well controlled and I have not responded well to many of the medications I’ve tried. However I am wondering if it could be regional - (I am in Cambridge), although in theory we should all be getting the same quality of treatment!

[Runrig01]

Specialists will only order tests like X-rays or ultrasounds, if the outcome would potentially change treatment. Sadly I think very few of us experience complete remission. Most of the meds generally just slow progression, they rarely halt it. Once RA affects your joints, you will invariably get OA as well. The slightest change to a joint whether from inflammatory arthritis or an injury, will speed up the wear and tear, even the slightest of changes. It is almost certain a combination of both, and unfortunately once RA starts to alter a joint, there is no way of preventing the wear and tear that will follow. I think if your rheumatologist had concerns they would offer further tests, but they are very skilled at assessing by touch. With finger joints particularly they will be able to feel if there is osteophytes forming at the margins of joints, the can feel the grating that occurs when the joint space is narrowed, or restriction of movement gives them clues what’s happening. I’ve worked with orthopaedic Drs for over 30yrs, and am always amazed what they can detect without X-rays, but when X-rays were done their assessment were generally very accurate. However, these days we have to advocate for ourselves, so speak openly with your rheumatologist re your concerns. After all we should be working in partnership with our Drs.

[Hollyhock123]

Hi, I have had a few X-rays completed in the 21yrs since diagnosis, but looking back to when, I think that may be more to do with moving house and care changing to a different hospital! However, my last set were partly to see what was going on with my feet, and I had ultra sound then too. But, yes mine have shown deterioration and from the last set taken I had a diagnosis of OA given. I do feel that I have been the instigator in this, as once the RA said it wasn’t that, they basically said go away to your GP. My podiatrist is always interested in viewing the X-rays and that discussion has been really useful to take back to my GP. I am now taking nerve end medication which has really helped the constant pain in my feet and my mobility has dramatically improved.

[helixhelix]

I had baseline x-rays of hands, feet and lungs taken when diagnosed 13 years ago. Since then i have had a bundle of imaging done. My rheumy ultrasounds painful joints at every appointment as my blood markers always low, but I have had other imaging done too.

Repeat of hands and feet every 5 years or so, but other x-rays, MRIs, scintigraphy and CT scans when I have had issues. Particularly lungs as have nodules, and heart as have a wonky valve.

She is conscious of the radiation load, but fir some things necessary to be able to diagnose.

[Fortune7]

As a general rule rheumatologist won’t have regular X-rays an scans done unless there is a big change in your symptoms. I’ve had R/A for 20 years an scans an X-rays are done when I have a possible change of treatment or I’m having an operation on joints. Otherwise I’m treated with pain killers and anti inflammatory medication.

[girli1111 in reply to Fortune7]

Do you mean disease modifying or anti inflammatory meds?

[Fortune7]

only usually scan an X-ray for change in biological medicines or operations. For a flare it’s usually steriods anti inflammatory meds as well as your usual meds hope this helps