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How often do you get imaging done?
#265006 03/16/14 02:44 AM
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Shirley Offline OP
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Hi, I was wondering whether your rheumatologist arranges xrays from time to time to check on progression/damage?

My rheumatologist has only ever sent me for imaging during my diagnosis (xrays of lumbar spine and sacroiliac joints plus scanning my hands and feet) and chest xray before starting humira,

My family doctor arranged for me to have a neck xray when my neck started spasming, before I went to a physio. He also arranged a bone density scan given my family history etc, where they commented that the bone density seemed fine but I had what looked like sclerosis in my hips that should be followed up, but rheumy just said the scan wasn't diagnostic...

I've never had my thoracic spine xrayed or scanned and that and my ribs/sternum are among my worst areas.

Last edited by Shirley; 03/16/14 02:46 AM.

Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.
Re: How often do you get imaging done?
Shirley #265008 03/16/14 03:02 AM
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My rheumy does x rays yearly, but truthfully I think it's because she has her own machines in her practice. She does the x rays but doesn't go over the results with you until next appointment which can be 6 months later.


Ann
HLAB27+
62 years old flexeril, tramadol, tramadol er, percocet, lidoderm patch, flector patch, voltaren gel + other meds for other conditions + lots of vitamins

Re: How often do you get imaging done?
Shirley #265013 03/16/14 03:46 AM
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I've not had imaging done since I was diagnosed. My rheumy said that if I had loss of range of motion or new symptoms we would x-ray, but if ROM is all normal (except my neck, which has not changed) there is not much point. Since I am already on biologics, x-rays would make zero change to my treatment.

I know many would disagree and get routine images. Still, I really don't want 50 years worth of yearly or bi-annual x-rays. X-ray exposure is meant to be limited over time and there are lots of recommendations to try to reduce overall exposure to x-ray and other radiation-based images.

The risk of repeated x-ray is small, but there IS a risk. And if it would not change treatment, then my feeling is what is the point? If it WOULD change treatment, that is a whole different story.

My SI joints are fully fused already. If I had fusion in my spine, I would presumably lose ROM.

Last edited by Mary Beth; 03/16/14 03:47 AM.

46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: How often do you get imaging done?
Shirley #265015 03/16/14 06:41 AM
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I have not had any x-rays except for the initial SI/hip x-rays when I was first dx'd. Although I prefer to be cautious about the amount of exposure, I have had symptoms for many years and would really like to know the condition of my spine. I suspect if my symptoms worsen, my dr would order more images of some sort.


Age 61. AS dx'd at age 57
HLA-B27+,iritis/uveitis periodically since 1970, diabetic
Meds. naproxen and muscle relaxer(as needed)
Re: How often do you get imaging done?
Shirley #265018 03/16/14 09:27 AM
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I had a full set of spinal xrays done during diagnosis. Then last year I was sent for a nuclear bone scan. Now that things have ramped up and worse then I have ever been I am being sent for an MRI and just had a full set of follow up xrays done...


Officially dx'ed Nov/10 after being symptomatic 10+ yrs. HLA-B27 positive. 200mg Celebrex twice a day, Targin for pain. Started SSZ in Nov'13 for peripheral issues. Jan '14 added Gabopentin for SI flare related nerve pain. Nov '14 added MTX to the mix. July '15 liver enzymes went crazy and off SSZ and MTX. Back on both at reduced dosages in Aug'15. March '16-son#1 dx'ed AS

Re: How often do you get imaging done?
Shirley #265047 03/17/14 10:06 PM
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If you have any choice, then I'd always go for MRIs over any form of radiation- as long as that was the best sort of imaging for the job. In particular I wouldn't want to be having xrays done as a routine and regular follow up.

But, having said that, I did have three SI xrays in succession just over a year apart - the third because the first two had shown changes, but still not quite enough to get a diagnosis. In fact the third did give me a diagnosis from a private rheumatologist, but the NHS rheumatologist doesn't see that its enough yet. I did that because my GP could order xrays but not MRIs, and also because at 58 I knew that my lifetime xray dose to date was actually very low. If I'd ever had CT scans, then I'd not be so quick to have another xray.

So, how often? Rheumatologist did MRI in 2011. He may order another soon - I think because I alerted him to new stuff that seems to be coming from my thoracic spine which wasn't imaged back in 2011. He wouldn't have seen a need to repeat it otherwise.

I suppose you have to ask what you expect to happen after you have imaging done. What is it going to change? If its just to see what it looks like, then that isn't enough. If changes might mean that your treatment changes then that might be a good reason.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: How often do you get imaging done?
Shirley #265057 03/18/14 08:58 PM
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I just had an x-ray done and my Dr. was surprised to see how much my neck was fused. I knew I had neck fusion but my c-spine looks like a stack of Oreo cookies. No bend at all. My thoracic is showing signs of fusion. Oh joy. This was the first full x-ray that I had done. Does it change my treatment...well she did add a new medication. :-(


MamaDi

Take One Day At A Time and Leave The Rest Up to God.
Dxed with AS, Ulcerative Colitis, Fused C2-C7, Bi-lateral SI joint fusion.
Meds are: Humira, Imuran, Lialda, Skelaxin (during the day), Flexeril (at night), and Narco, Tramadol.

Re: How often do you get imaging done?
Shirley #265058 03/18/14 09:31 PM
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Originally Posted By: Shirley
Hi, I was wondering whether your rheumatologist arranges xrays from time to time to check on progression/damage?

Nope. But I have no damage showing up on imaging (yet?) - so every couple of years one of my docs will get the urge to get a new MRI or whatever to try to crack the code....


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: How often do you get imaging done?
Shirley #265315 03/30/14 11:37 PM
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Rheumy did some x-rays (lumbar and SIJ) on the date of my referral in 2009 and none since. I suppose if something needed x-rayed, he would do it, but he doesn't do it routinely.

Pain doc has done MRIs on every spine level, plus SI, to assess for problems based on symptoms, but only repeats for new-onset symptoms.


Psoriatic Arthritis, Osteoporosis HLAB27+
MTX, gabapentin, strontium citrate
Cosentyx from Oct to Dec 2017. Then back to Cimzia in May 2018.
Already tried Remicade, Enbrel, Simponi, Humira, Cimzia, Cosentyx.
Re: How often do you get imaging done?
Shirley #265321 03/31/14 01:21 AM
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I get MRIs periodically to monitor my progress. It has been able to show inflammation around my t-spine at SI joints in addition to erosion at the SI and bone growth at the t-spine.


Male, mid 50s, Dx Reactive Arthritis 1981. AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Some bowel issues, anemia. Inflammation of the joints in hands and feet.

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