At a recent appointment with consultant rheumatologist, he referred me for x-rays on hands and feet to monitor for joint damage. This came about due to changes in my feet. The rheumatologist implied x-rays should have been taken when I was first diagnosed (4 years ago now).
I wondered if x-rays are the norm when diagnosed, or only if joint problems are suspected. Or basically is it a post code lottery and down to each rheumatology dept.
I'm just curious.
Many thanks
Seb
I didn't have any but that was way, way back. I've had surgery on my left foot to straighten but RA only caused obvious damage to my left foot. My hands are affected but never been x rayed but probably don't need to be as its swelling not joint damage. So sorry I don't know.
I was diagnosed in 1997…….no X-rays anywhere as far as I remember. Only had foot X-rays when I developed neuromas & had surgery to remove them.Feet have been fine ever since.
Hands also only Xrayed when Osteo Arthritis popped up.The joints are a bit swollen& don’t look very nice, but nothing bad enough that I would consider surgery.
I really don’t know, but I think it’s individual rheumy choice…at my clinic some consultants are surgery happy & I speak to people who are always waiting for something more to be done….other rheumies - like mine - seem to wait for the patient to ask.
I was diagnosed in 2004, and had both hands x-rayed on my first appointment, but not my feet. In the last month I have also had my hands checked by ultra sound.
Thanks. Was the ultra sound in response to problems or precautionary?
It was in response to problems. My rheumatologist is amazing. Both my hands are badly damaged. I had an appointment to have my left shoulder looked at by ultrasound, on the same day as a rheumatology appointment. While with the rheumatologist she said she would refer me for hand scans, because my hands are so badly damaged. The referral came through while I was actually having my shoulder scanned, and because the next patient hadn’t turned up, I got both hands done on the same day. I’ve had a telephone consultation with a hand therapist, and my next appointment will be face to face.
Sorry to hear about your damaged hands. That is very good service though. Hope they can help you. Seb
Thank you
I had X rays taken when I was diagnosed about 4 or 5 years ago. Never been repeated so not sure it has achieved anything.
Hi yes they are normal with a good rumatologist, myself got them and had them a good few times since
Thanks. Amazing how the treatment people receive varies around the country.
These days X-rays and scans are usually only approved, if there is a problem needing investigating, in order to prescribe correct treatment. They are not really done for curiosity, as they are an unnecessary expense, so often radiologists will turn down requests, if there’s not sufficient information on why it’s needed.
Also there has to be a risk reward benefit analysis done since there are risks in radiology especially repeated x-rays of the same area.
I had hand and foot x rays at the start of my RA . I was told it was for a baseline to monitor my condition.
This was way back in 1999.
I did have xrays on hands many years ago, been diagnosed over 30 years, had exercises, not severe enough for anything else. I agree with Runrig.
Many years (30 ish) ago had hand x-rays but never feet as they weren’t considered particularly indicative of RA ( though I beg to differ) and although most people with RA feel as if they’re walking on pebbles or broken glass, the feet were more or less ignored
However I moaned pretty consistently about my feet over the past couple of years and last October instead of x-rays had ultrasound on both hands and feet which showed considerable damage from both RA and Osteoarthritis in both hands and feet. Inflammation shows up brilliantly on u/s and therefore is much more targeted for steroid injections if necessary.
My rheumatology team has been outstanding throughout and moaning gets results so I have been very well served but I do think it depends on the head honcho, whichever Trust you’re under, money, postcode, money, staffing, money………….hopefully that satisfies your curiosity! 😀
It does! Many thanks.
I’ve had RA for two years and diagnosed just over 18 months ago. I had hand X-rays at the beginning then X-ray of the feet six months later. The consultant said I should have had both at the beginning of treatment.
Thanks. There doesn't appear to be any consistency regarding x-rays after diagnosis which doesn't seem right.
Too right. This is just one aspect of RA treatment that is inconsistent. I've lost count of the number of times I've read these pages and people have posted wildly different stories with regard to specialist access and treatment plans. It all seems like a bit of a postcode lottery. For me personally, once I finally got seen, I have no complaints about my treatment - I'm just not lucky enough to find the right drug yet. The taking of x-rays seems entirely sensible to me as a baseline to monitor the progression of the disease. My consultant said they would be repeated every couple of years.
I would think it depends how you present. I was hobbling and had swollen hands, so they did xrays feet ankles and hands. That was 23 years ago and I have had them repeated a few times depending on what I am struggling with. It's a good place to start to see activity if you are initially diagnosed, but as I said being a RA patient and an ex nurse how you first present would indicate what xrays to see.
Best wishes
I presented the same. Struggling to walk due to the RA in my knees, swollen and painful hands and feet. But no xrays were requested by rheumatology. This was in 2021. Doesn't seem like progress to me.
It does seem odd they didn't do them. You are right by saying it's a lottery.
NO xrays are not the norm. If say after 1 year you had problems and YOU had concerns you could have requested them, Once they do the x rays now anyway all they will say it is part of the RA and this is normal to be expected on the joints so dont expect a massive Oh dear this has happened and that has happened and this is what we are goign to do, they wont do anthing, be prepared
I had xrays of both hands and both feet when I was diagnosed a year ago. I am in New York state. I think they want to know if joint damage is occurring, as well as have a baseline to compare against over the coming duration of treatment.
That seems like a common sense approach. My feet have changed in the four years since I was diagnosed. Had xrays been taken four years ago the change could be compared with now. Given the replies, it seems to be inconsistency in approach rather than a nationwide policy.
yes usually normal , I had chest, hands and feet xrayed when first referred to rheumatologist!
I had hand x-rays as part of the diagnosis process last year. I definitely need feet x-rays so I assume they'll be coming when I actually get to see a rheumatologist in May.
hi Sebastian, I was diagnosed with RA last year ages 63, I had X rays of hands and feet requested by my Rheumatologist as part of my initial assessment.
Regards
Thanks. I was diagnosed in 2021, age 58. I was struggling to walk due to the RA in my knees. I did have knee xrays requested by my GP, checking for osteoarthritis as the cause of the pain. It was months after I was finally referred to rheumatology and then diagnosed. My hands and feet were swollen and painful. But no xrays were taken. It does seem to be a lottery.
Definitely a postcode lottery.
I had more regular x rays and appointments back in the 1970's & 1980's. I've only had an ultrasound once in 54 years of having RA. It was supposed to be hands and feet but the rheumatologist only scanned hands and never did feet. I think he ran out of time as he was teaching a junior doctor.
Since then, every letter states ... 'u/s hands and feet 2017' which of course is untrue and misleading to every other doctor that reads it.
Mind you, the best one was when a ?rheumatology nurse assessed me for a DAS score when all she saw was me sitting on a chair wearing a jacket, no examination or asking how I feel out of 10 etc.! A lot of appointments end up being a waste of time and merely a tick box exercise.
Also, get the cancellations and ghosting for months and years on end between appointments and no messaging facility on My Chart.
X-rays are useful to assess how severe it is in more advanced damage. Not much use in the early stages which is when you want to catch it. It's much less used these days as ultrasound gives useful information at an earlier stage. X-ray is more use assessing how much damage has already occurred and progression from then on.
My RA showed up in hands and feet in 1977 and I must have had xrays taken then. I was given medication called Opren in the early 1980s which was withdrawn shortly afterwards because of the serious side effects in some people. Then my hands and feet really flared up and after xrays my rheumatologist said there was joint damage now. After all these years I have very damaged hands and feet plus all other joints. I had the same experience as runrig regarding ultrasound as I had a serious flareup in my midfoot after my first Covid injection. Twice I have been for untrasound, also with a junior there, and they never got around to my feet only my hands. I would say they should do base line xrays to compare with any later progression.
Hi, I had xrays when first diagnosed. I thought it was a standard practice but this was over 15 years ago, so it may have changed
I had hand and feet x rays when first diagnosed 15 years ago. I also had ultrasound on my hands and feet which is where they saw the inflammation and I was started on triple therapy of methotrexate, sulphasalazine and hydroxychloriquine. Now o biologic, tocilizumab.
I was diagnosed about 2.5 years ago and yes had feet, hands and knees x-rayed early on so they had a baseline to work from. I live in Lincolnshire and initially saw my rhemy on a private basis but then transferred across to his NHS practice.
Hi Sebastian Happy New Year to you.my body was x rayed early on and then I had a nuclear bone scan all over.RA and OA was diagnosed and meds were given.About A year to 18 months later though when I was still complaining about pain weakness and some swelling particularly in my hands and feet they sent me for a hand and foot scan.The hand scan showed RA synovitis and even though I mentioned my feet as they cause me so many problems he said there was no need if it was showing in my hands then it would be in my feet .I am on biologic injections now and hydroxychloroquine but I still need prednisolone steroids on a regular basis. I wish you luck on your journey hope you find relief .
Happy new year to you too. I hope you are also getting the treatment and relief from pain you deserve.
Hi I was diagnosed in 1999. It took 9 years & a private consultation to get the diagnosis after I was turned away by our local Rheumatologist 3 times. I had sero negative RA so no real swelling. I never had x Rays of hands or feet when diagnosed. My feet have changed a lot over time & are a mess. I don’t think it was usual practice back then.
Sorry to hear how you've suffered over the years. I really appreciate you taking the time to share your experiences. Seb
I’ve just had X-rays and ultrasound done on hands and feet by my new rheumatologist so I think it’s a new thing to be fair to check for ra
Take care
Wendy xx
Yes the day I was diagnosed my rheumatologist sent me round to radiology for x-rays of my hands/feet. I think they are then meant to be done on a regular basis. Mine weren’t but my rheumatologist retired a couple of years ago and the first time I saw my new one she sent me straight round to radiology for up to date x-rays.
Good to hear your new Rheumatologist seems to be on the ball at least. Very best wishes and thanks for sharing your experiences. Seb.
I have had x-rays on my twice, checking what's damaged what's RD or OA I have both in my hands. Also had left knee x-rayed to check how bad the OA is in it. It helps to see which condition is causing what damage I believe.
I was diagnosed 2002, I was 13 and had x-rays, not sure if it was because I was a child. I also have them every 4 years, guess it's on what the consultant chooses.
From the replies to my original post, it seems a total lottery. Really appreciate you taking the time to respond. Seb.
This amuses me. When I was first diagnosed in 1982 they sent me for xrays on hands and feet to monitor joint damage. Since that time I have obviously deteriorated and been on lots of meds over that time. However…no repeat of those xrays! 😂😂
Good luck with your RA journey
I'm glad you can retain a sense of humour! Many thanks for sharing your experiences. Seb.
I was diagnosed November 2023 and the only x-ray I had was a chest x-ray which I presume was for MTX
Before my diagnosis they did x-rays because I had very painful and swollen joints with no explanation. I have flare ups in my wrist, toes, fingers which have all been x-rayed before but since my DX they don't x-ray anymore.
Thanks. It does seem to vary enormously. Best wishes.
For me, it was the norm. First consultation 18/11/24 at 1.30 pm, bloods, X-rays hands/ feet, heart checked, and in my car to go home 2.30. Diagnosis 19/11/24 and Rheumy nurse appointment sorted for education etc. Very impressive
That is impressive. I just can't believe the variation in treatment. I've never been offered an appointment with a nurse for education about RA. I was told to go to websites!
I had some arranged by my rheumatologist on my first visit to assess/identify any bone damage, as she said with psoriatic arthritis you have only a few months after symptoms start to get onto treatment or bone damage will occur . This seemed to be her routine procedure. We are in Ireland
Your rheumatologist seems very good. Thanks for sharing your experiences and hope you're doing well. Seb.
I had X-rays 18ths ago when I was first sent to rheumatology. I had further ones a month ago because of damage that has been caused I that time. They haven’t given me the results though - but they did double my medication a week after the X-rays
Hi, I know it must be frustrating, but I believe the decision to xray or not is more than a postcode lottery. Most conscientious doctors are wary of too many xrays. We all know the dangers of this. I have had many over recent years; hands, feet, knees, shoulders, chest, and 2 ct scans of chest and kidneys. Too much really. I understand your point of having xrays as a baseline at diagnosis. In my case it's osteoarthritis that's caused the joint damage. I hope you get the correct treatment soon.
Thanks. For whatever the reason there is a big variation in approach, which strikes me as odd. Anyway I've had the xrays now, which was organised very quickly and efficiently. Based on my previous experiences I won't get told what the results are though, which is frustrating.
I am new to this site and RA. For years I have suffered phases of extreme pain in my feet, hands and elbows.
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