If there have been no x-rays or scans done for three ... - NRAS

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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?

Ellenkay profile image
12 Replies

I have only ever had x-rays done of my hands and that was three years ago. I have just had a letter saying (amongst other things) that there is no RA erosion. I am confused as to how this can be stated when there has been no diagnostic imaging carried out? Can anyone help? Thank you.

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Ellenkay profile image
Ellenkay
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12 Replies

All I can say is I'd be confused too, Ellenkay. There's a lot of discussion on here at the moment about the whys & wherefores of imaging - might be worth reading through if you have not done so already as some views and information etc. might be very relevant.

I'm wondering what led to the letter (assuming it didn't just come out of the blue) - was it a follow up letter after a Rheumy appt.? I'm sure you'll get some very well-informed answers but meanwhile, if I were you I would query this with your Rheumy straight away.

Luce x

Ellenkay profile image
Ellenkay

Hi Luce,

Thanks for your answer. I am new to the forum so I shall have a look at what you recommend.

Yes, it was a follow up letter. I shall query this when I see my Rheumy at my next appointment.

Ellen x

in reply toEllenkay

Just to say why not query it sooner ..... I think sometimes queries and requests in between appointments hit home more than all the stuff we save up for those precious appointments - just too much to cover perhaps.

Ellenkay profile image
Ellenkay in reply to

Good idea... now, to be brave!! x

alicn profile image
alicn

Hi Ellen, definitely query it with your rheumy or his secretary. The thing with erosions is that they tend to xray for them on presentation of symptoms and then not always again using the rationale that early aggressive treatment should prevent further/any joint destruction and if you have been on treatment since diagnosis then hopefully you will have minimal risk of new erosions from that earlier xray. Ra can still be active without causing erosive changes if it is being treated, on the whole. Repeat xrays can be done if it is thought that the drug control may not be having enough impact and these would be compared to the previous images. If you have been on NICE recommended meds and have responded to them, he may be summarizing though i agree that its a rather wide umbrella to cover 3yrs history in a recent letter! Check it was meant for you!

Good luck,

Ali (im a radiographer so i have some knowledge re imaging x)

Ellenkay profile image
Ellenkay in reply toalicn

Hi Ali - thank you. I can see the rationale of that - unfortunately for me, I have not been on any meds due to other related health issues - which have taken over two years to diagnose, so in effect my arthritis is untreated... and doing what it likes! So I was wondering how all my joints can be declared to be erosion free when (a) I've not been medicated and (b) no imaging has been done to confirm or disprove it. I could go into greater detail but my case is so specific that I feel worried that I am, if you like, going behind the consultant's back to get answers .... but I suppose if he is not providing them...I have a responsibility to myself to try and sort things out.

Thanks for your help. x

Hi Ellen. Here is the question I asked earlier this week and here are the responses I received. nras.healthunlocked.com/que... - Tilda

Ellenkay profile image
Ellenkay in reply to

Thank you Tilda, I shall read these through x

You're welcome Ellen. I think for some of us the NHS is so slow and things can be lost or forgotten about that you have to take responsibility for getting x-rays and researching meds yourself quite often - that's certainly been my RA experience to date anyhow! Tilda x

Ellenkay profile image
Ellenkay

Oh Tilda - you are so right!!

I've been waiting for a month now for a letter from a London hospital (not RA related) to inform my GP of a diagnosis of a potentially serious condition for which I have to have a medic alert document - and it has not materialised. Apparently, the dictation has been

L O S T. Which also means the consultant's record of our meeting is L O S T apart from the small amount of writing he did by hand.... It has been so stressful.

Just what am I supposed to do? Deep breath!!

Ellen x

alicn profile image
alicn

Hi Ellen, so sorry to hear how much stress your being put under at the moment, it's not going to help your ra that's for sure! I really feel that given you've not been on any treatment medication for your ra that it would be very very reasonable for you to request further imaging on your hands/wrists/feet to compare to the baseline images of 3 yrs ago. Surely with the complexity of your case it is essential to see how the disease process is behaving. Im sure that he wouldn't feel you were going behind his back on asking for this, we are in an age of patient empowerment in the NHS or are striving to be...good luck xx

Ellenkay profile image
Ellenkay in reply toalicn

Thank you Ali. Wish me luck with that ... lol!! My rheumy is very definite about things that he pronounces .. and I feel it is not easy to challenge him.

I really appreciate your input as a balanced, outside view.

All the best,

Ellen xx

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