Nuclear Bone Scans for Rheumatoid Arthritis or Scintigraphy
Bone scans for Rheumatoid Arthritis that “Lit up like a Christmas tree”!
Several patients have told me stories of having a nuclear bone scan (scintigraphy) that made a difference in their diagnosis or treatment. We know how much a reliable imaging tool is needed measuring disease activity for either reason. I’ve read about different versions of nuclear scans, trying to determine how effective it is and trying to decide whether it would be a good idea for me. Some patients have been able to actually “see” the inflammation in their joints that doctors could not perceive. Many patients have said this was an answer to the doubting of RA symptoms that were not confirmed by other tests.
Scintigraphy is a radiographic diagnostic method that may detect bone abnormalities after the injecting of a radioisotope as a type of radioactive dye into a vein. There seem to be several different materials that have been injected over the years. Some are more effective than others at illuminating inflammation. Here is some of what I’ve learned about nuclear bone scans so far. I’d love to hear about your experience.
- All the way back in 1993, scientists found that different substances were more effective than others when injected prior to the bone scans.
- In 2009, anti-CD3 was effectively used in the nuclear bone scan to effectively differentiate between osteoarthritis, RA, and gout.
- It is often said that the nuclear bone scan is much more effective in early in the process of RA disease.
- For every article about scintigraphy I read that says, “Eureka! A sensitive and specific method to detect disease activity in Rheumatoid Arthritis” I find another which says, “Not so fast.”
- Did you know they do this with TNF? “Radio-labeled human anti-TNF mab allows visualization of synovitis in patients with RA. Joint accumulation of this agent is partly due to specific TNF targeting and is highly predictive for inflammation.” Annals of Rheumatic Diseases, 2003.
From Imaging of Arthritis by Barbara N. Warren Weissman:
“Scintigraphy may detect inflammation or bone turnover at sites of active erosion. Several approaches for evaluating RA have been tested with bone, joint, metabolic, and inflammation-seeking radiopharmaceutical agents. Scintographic techniques rely on specific images in probes to target disease activity. Common radio labeled probes include biphosphonates to detect bone turnover and leukocytes to detect inflammation. Molecular probes that may have utility for RA include albumin nanocolloid, immunoglobulins (specific and non specific), and F-fluoro-deoxy-glucose (F-18-FDG).”
Bottom line: bone scans are imperfect
On scintographs for RA from the Oxford Journal of Rheumatism in 2007: “We believe that the disproportionate number of requests from trainees reflects a misunderstanding of the sensitivity and specificity of BS (bone scans) for inflammatory arthritis. Non-specific uptake may lead to further investigation rather than patient reassurance….. The number of false positives is unknown but it is clear that BS are unable to reliably distinguish between ‘active’ and ‘inactive’ rheumatoid arthritis. This lack of specificity has been further highlighted by comparing different imaging modalities (ultrasound and MRI). Computerized image analysis yields only marginal improvement. Despite these limitations, does a positive BS still have value in predicting joint damage in inflammatory arthritis? A careful study in early rheumatoid arthritis found that erosions were predated by persistent scintigraphic activity in affected joints. Of note, however, almost all finger joints that eroded were active on clinical examination. The sensitivity of clinical examination was inferior to scintigraphy in the foot joints, but as analysis was by joint rather than by patient and as the scintigraphic score was derived from multiple BS, the implications for routine clinical practice are not clear.”
Maybe my doctor read that. My rheumatologist told me that it’s not worth my getting this test. I really wanted it, but Doc said half of all RA patients have negative results and Doc never has a positive one. I guess Murphy’s Law has something to do with that discrepancy. Doc said this often ends up being one more negative test result to put into a patient’s chart. I think that means, “No.”
Recommended reading:
- Rheumatoid Arthritis Test: Some Funny Factors
- Measuring Rheumatoid Arthritis Disease Activity
- 10 Dumb Questions About an MRI for Rheumatoid Arthritis
- Ultrasound for Rheumatoid Arthritis, Part 1
“Lit up like a Christmas tree’ was exactly the words the tech used when my nuclear bone scan image came up on the screen. My Rheumy said it helped her see which joints were inflamed at that moment in time although were only one part of the diagnosis. I had the scan immediately after diagnosis.
Hi Molly. I wish I could count the number of patients who told me the same thing as you! Very often they say that their “inflammation” blood tests were negative, but this one “worked.” I so wish I’d had that scan in those early months when I was not believed and the pain was in dozens of joints at once.
Thanks for the info! I have been dealing with negative test results for over a year but have all of the symptoms. I get a bone scan on Tuesday! Praying for answers!
I had Scintigraphy 3 years ago and it was the first time I had actual proof that I have problems, because usg’s, x-rays, MRI’s were perfect. Just like your title says, it lit up like a Christmas tree (if you prefer purple ones). No nasty side effects, just a pretty picture of my skeleton with joints and spine in many joyful colours.
Wow, Daiga. These comments are making me want to call me doc back and say “Let’s try anyway.” Wouldn’t every patient love to see a picture that validated their pain?
My dr. Has never said a word about this!! Wonder what he would say if I brought it up!! LOL
Kim
None of mine have either Kim. I just kept hearing about it over the last couple of years from other patients. :O
In the last ten years I have had numerous Bone Scans ordered by my spine Doc due to osteoarthritis of the spine. He was looking for signs of osteoporosis.The last Scan I had was through my Rheumatologist. She was checking for osteoporosis also. As a result I am getting IV Boniva with my Orencia. RA was not mentioned in the discussion of the Bone Scan results.I can’t wait until my next app’t to bring this up with my Rheumatologist. I didn’t realize that RA inflammation shows up on a bone scan…
A bone density scan used to help detect osteoporosis or fracture risk is completely different that the type of scan that Kelly is talking about. I doubt very much that a bone density scan would be a useful tool for measuring RA activity.
I just found this GREAT web site. I am looking for a chat room for RA. Can anyone help. I am not PC savy & RA google friend will not let me sin in. TX
I’ve also seen a number of studies using radiopharmaceuticals for measuring disease activity. The problem with most of these is that they all depend on current knowledge of RA and molecules (cytokines and/or their cell receptors, glucose, etc) that are implicated in its activity. We still don’t have the “holy grail” molecule yet, just things that are associated with activity. I also question the value of these in measuring disease activity. If a doctor would just believe their patients when they say that certain joints are stiff or hurt, that should be sufficient in my mind.
Personally, I wouldn’t want to have too many scans with these types of imaging agents. They are radioactive after all. Yeah it is a microdose and the molecules are usually cleared fast and the radioactive isotopes degrade pretty fast, but it is still radioactive and ionizing radiation is known to damage DNA and cause gene mutations.
All great points! And… by the way, the same reason why my doc just shrugs and says, “Why would you want it?” since I’m already treated / believed at this point.
To ponder the why – that ought to be a blog. Maybe because I wish they understood to a greater extent how badly this RA has affected my life. I tried to say it with words yesterday, but I’d guess the comprehension is not above 20%. And that is with a “good” doc who is treating anyway.
Hi
Just saw here that your doc did try to make sure that you knew about radiation and that it would have no value. It would be good if you could write that post about why you still did want it.
AM
I’m sorry for any confusion, Amy. My doc never said either of those things. I was never warned about radiation but when I asked about it I was actually told by the radiology dept. not to worry that the scan was “safe enough to have every day.”
My doc did not say that it had no value. But doc expressed frustration that the scans were all unsuccessfully performed. Doc did discourage me on this particular day because of not wanting to put a negative test into my chart – I presume that has to do with insurance coverage.
Thanks for clarifying.
One of the first tests I had 24 years ago was a bone scan. My doc said that my hands and knees were definitely lit up and he used this to help him diagnose my ra. I am seronegative (SLE positive)so this gave him more of an indication of active disease then my blood work. I’m very glad he did it. I was able to get diagnosed very early. I believe I avoided some erosion because of the aggressive treatment I received early on.
If only I’d known I might have been able to get one of those a few docs earlier! My aggressive tx did begin as soon as I got a doc who “believes” patients as RaRAP said. So there can be treatment without the scans if there is a good doc. But scans could help the other docs see.
I’ve been reading your blog for awhile now and this is the first that I’ve ever commented but you’ve been a great source of information and support for me. My doctor sent me to a rhuematologist a year and a half ago when I had sudden joint pain and swelling and fatigue. I waited three months to see him and because my blood work was negative he was positive it was osteoarthritis and fibromyalgia. Finally, I decided to seek a second opinion. This doctor actually listened to me, examined me, took xrays – quess what? No osteoarthritis! He explained to me that blood work is often negative early in the disease process but my clinical presentation is RA and he began treatment. I am, for the first time in a year and a half, actually beginning to see a reduction in pain.
The point here is that while a scan might help a doctor who is not a great clinician (is that the right word?)chances are good that they wouldn’t use it anyway because they are not listening to begin with. I think the best skill a doctor has in diagnosis comes from listening to their patient, taking a good history, doing a good exam. Then the appropriate tests and the results. If they don’t listen, they don’t know where to go next.
My first rheumy? I told him I was concerned by how quickly my symptoms had come on. He responded by telling me that osteoarthritis takes a long time to develop. Don’t think he was listening.
Sorry for being so long winded. Great blog!
Hi Leslie,
Thanks for speaking up. 🙂
What an extremely helpful comment!
Hi Kelly! I’ve posted here a few times about my mom having RA. Well guess what? I’m showing symptoms now too (pain, horrible stiffness/swelling, crooked fingers, loss of grip, etc). Murphy’s Law really loves us, doesn’t it?
My PCP doesn’t believe me about my pain and symptoms and won’t refer me to a rheummy. My sed rate and RH factor came back negative this week, but he doesn’t know and won’t listen to me about how that’s common at first with RA. It’s frustrating to know that I probably won’t be diagnosed until damage has already been done. I wish I could convince my doc to order a bone scan! Based on how I’m feeling, my hands and feet would be a mass of light.
At least I’m lucky enough to have my mom with me. She’s been there before and knows how dismayed and frustrated I feel about this. I’m bringing her to my next appointment with my PCP (at her insistence). She’s been dealing with doctors who don’t listen to patients about RA for 20 years now, so hopefully she’ll have more luck with my doc than I have!
Anyway, thank you for your wonderful blog. It helped me understand my mom’s struggles before these pains started showing up, and I’m informed and connected now that I need the information and support for myself. Take care 🙂
Here’s what you first posted, “Doc said half of all RA patients have negative results and Doc never has a positive one.”
Now you said, “But doc expressed frustration that the scans were all unsuccessfully performed.”
If it was the latter, then you should’ve requested he clarify the order to look for RA and not just “full body scan”. No wonder he/she’s getting negative results on all his/her patients.
I do understand your desire to have a concrete test value to quantify and prove your continuing pain and lack of response to dmards and biologics, though truly, it probably wouldn’t change or drastically change treatment at this point unless it was found to be not RA. I’m so sorry this didn’t work out.
All I can say it’s that’s what happened. I don’t see any inconsistency. However, if it’s perplexing to the reader, then it shows how it felt to be the patient. The order came to my house in the mail. I only assumed that the docs knew what they were doing when they told me to take it to the hospital. I know a lot more now, but I didn’t realize that my scan times were all off that day since I again trusted that the pros would just do it correctly. Of course I told the tech I had RA – actually had a long talk w/him & gave him my card since his wife is a new RA patient.
As far as the purpose for the scan, I’ve not fully explored that in my posts, but David Buindo has created an excellent summary from his doctor’s viewpoint in a comment on the My Dr. Fired Me post & I would find it hard to improve upon. The docs I’ve talked with online who use these scans use them in the way David said. The comments by Dr. Kirsch on the blog & Twitter confirm that also – they use it to confirm extent of inflammation in patients with other evidence lacking (possibly CRP or dramatic external swelling).
It’s all ‘Monday morning quarterbacking’ I guess. (Is that the right term? I don’t follow football! I also don’t twitter or use facebook or texting, if that tells you anything.) Since the doc didn’t give you more explanation either then or the other day, I guess it will never be known for sure. I do think that docs sometimes order tests but don’t know the nuances of how they should be ordered, or their staff don’t know how to correctly order them for the particulare patient/situation. Sometimes they have one office form they use, whereas the radiology dept might actually have a more detailed form that would be more helpful but the office doesn’t have it or use it. Also, the techs only follow the order as written and don’t provide all those details you may discuss while the test is being performed. Of course these are things patients don’t know when going in and only sometimes learn of after the fact. Anyway, that’s just one possibility I guess.
I had a bone scan done today because my rheumatoid factor and anti-CCP were both negative. My x-rays also do not show any damage yet (thank goodness) so my rheumatologist didn’t have any definitive proof that I have or do not have RA. I have joint pain and stiffness in my hands, wrists, shoulders, elbows, hips, spine, knees, ankles, and feet. My stiffness lasts from 1-2 hours every morning and will start over again if I sit for too long at work. I also have nodules (had one removed and it tested as a rheumatoid nodule). The nodule I had removed from my finger promptly grew back also. I have others on my knee and my feet.
So, on to the bone scan: my shoulders, wrists, hips, spine, and ankles showed dark on the scan. I couldn’t see all of the scan because it was done in segments so I am going to request a copy of the report next week. But I feel like this proves that my joint pain was real and it proves it before any damage has occurred. Hopefully when I go back to the rheumy on May 25th he will have a plan of action for me.
I find it interesting that the doctor said many come back negative. All my labs are normal as well as my xrays. I have never had any obvious swelling or redness of my joints either. The bone scan lit up in my elbows, wrists, hands, knees, ankles, & feet. If she wouldn’t have done it, I’d likely still be diagnosed with fibro only. If I already had the diagnosis though, I wouldn’t have had it done. The chemical they injected me with was 0.5ml of radioactive phosphorus. It is absorbed like taking a supplement & has less radioactivity than one xray. Therefore it is actually very safe in comparison to all the xrays we get. They can do the whole body in one shot!
My rheumatologist was very dismissive of my symptoms. She said my problems were in my head (yes she said that), then she said they were because my ankles were twisting, then she said it was Fibro. I told her I disagreed (I wasn’t putting up with it!). She ordered a bone scan and she said she “doubt[ed] it would show anything”..
I had my bone scan earlier this week. This afternoon I got a phone call from the rheumatologist. I have arthritis in my knees, shoulders and fingers!
She’s starting me on a DMARD at my next appointment! (Monday).
The bone scan gave me the answers I needed. If it’d showed nothing or I hadn’t done it, I would have been left to deal with my symptoms.
I asked her if she could give me a diagnosis now, she said no, but my symptoms point to Sjogren’s and Lupus but my blood tests don’t. She said it’s definitely a connective tissue disease. At my last appointment she said it definitely wasn’t an autoimmune disease! This is not something I thought I’d have to deal with in my early 20s!
Thank you for this blog, It’s such an amazing resource!
Thanks for posting your example. It helps encourage other patients. I hope you get treatment to get your symptoms controlled however the diagnosis comes out!
I really hope my story helps someone! I was humming and haring about whether to go through with it. I don’t think I could have handled another negative result. But it showed something! And I also had it re-read to show fingers (MCP, DIP), wrists, shoulders, sacroiliac, hips, knees. I’m convinced my toes would have shown up if I hadn’t been wearing leather Chucks and had my feet lying flat rather than straight up in the air. But my rheumatologist did say “bone scans don’t differentiate between inactive and active arthritis”… I thought ‘well why bloody order one then!!??’. But I’m now on Plaquenil and Meloxicam and have Prednisone for emergencies. It seems they’re leaning towards Psoriatic with the sacroiliac and DIP involvement and I have minor pitting and splinter hemorrhages in my nails. And possible ‘secondary Sjogren’s Syndrome’. Thanks again for your amazing website.
Thank you Mary. You are right that posting your story helps others!
On the several posts on this topic, we’ve heard from quite a few patients with similar situations where they finally got the scan and the doctor finally had to admit the disease activity was present and they finally got treated. And like many other patinents, I only learned about this test via other patients!
I’m an Irish rheumatologist and was interested to read this link. My experience, for whats its worth with bone scans is as follows;
Radio-isotope bone scans used to be a commonly used investigation of choice for patients with suspected inflammatory arthritis (e.g. in the 1980’s and 1990’s) where other tests were non-diagnostic. Has really been surpassed by Ultrasound and MRI as they tend to be more sensitive (i.e. they pick up more patients with arthritis) but also more specific (they don’t over diagnose arthritis when it’s not there). I’ve seen lots of patients with inflammatory arthritis with normal bone scans too!
Bone scans, although sometimes helpful ,don’t look at structures around joints like tendons / cartilage Joints and can look ‘hot’ on bone scans in osteoarthritis too.
I still use it occasionally in my practice but it is usually normal if you think its going to be i.e. surprises are rare enough. Its important to realize the limitations of all of these tests.
Thank you for commenting. There are several posts on MSUS and MRI here. I agree that these are important tools, each with limitations.
Here are a couple of them below, but I’ve been working on an important new one – had to set things aside due to travel. Hope to finish soon.
https://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/
https://www.rawarrior.com/ultrasound-for-rheumatoid-arthritis-part-1/
https://www.rawarrior.com/2-reasons-monitoring-rheumatoid-arthritis-matters/
Ronan, it’s nice to see a rheumatologist on here commenting and reading people’s replies.
My rheumatologist told me my bone scan would show nothing and that it was most likely Fibromyalgia. It showed uptake in my knees, hips, sacroiliac, shoulders, wrists and DIP and MCP joints. So I was one of the rare surprises! My rheumatologist went with a bone scan over an MRI (ultrasound wasn’t mentioned) because she said it’d only show active inflammation on the day of the scan, a bone scan would show what’s there, but may not be active. Also an MRI was the more expensive option. Unfortunately my last appointment I had to see a different rheumatologist. He made the comment about them being almost useless because of the inactive/active factor. But he did start me on Plaquenil, Meloxicam and gave me emergency Prednisone. So it was enough to be taken seriously! Finally!
=]
I found your blog because of my search on nuclear bone scans and arthritis. I was interested because after many many many years of pain in lots of areas, my rheumatologist did the test on me. I lit up like a Christmas tree, the results said it is degenerative, even though still to this day, I question whether it’s all degenerative or inflammatory. my blood tests come out negative except for mildly elevated muscle enzymes, which I’m told is normal. sometimes I wonder about my current rheumatologist and have decided that at my next blood tests (to check to see if huge doses of vitamin D, really huge, have brought my levels up at all) to make a decision to stay or go. I have lots of myofascial problems but I have more than one bodyworker who has suggested I have more of a problem (such as a connective tissue disease). So I guess for me it was a great test because it really answered many questions but I still feel I don’t have complete answers. I still ask how I have the arthritis, it’s all symmetrical and can be OA. I have a curved spine and injuries, so you’d think one side may have something where the other may not, or one be worse and the other not but no, all symmetrical, and as xrays are being taken, because of joints speaking louder, arthritis at the same level, not say, moderate vs. mild. you know, one hip joint mild arthritis, the other worse. even my orthopedic doctor looking at my ongoing shoulder problems said “you have RA, don’t you?”.
So anyway, thank you so much for your great articles on this subject! They have been extremely helpful! take care of yourself 🙂
I am very frustrated with my R.doc. Been seeing then now for over a year about my pain. I have had a couple of cortuisone shots in my knees for swelling and excrusiating pain.
But they never really tell me what I have. They just say to take my pain killers when the pain comes. Then, sometimes, they give me a perscription for cortisone pills, they work for a few days but they never try to identify the problem. In the past month, I have gotten back my psoriasis along with joint pain all over my body. I keep suggesting to my doctor to test me for psoriatic arthritis. She says she does not think I have PA. She finally tested my blood for inflammation, an indicator of PA. Sure enough, it showed ellivated levels of inflammation. She still does not think I have PA. so she told mom to go home and take pain killers if I have pain. I got so frustrated, I complained to my doctors nurse practitioner.
They finally sent me for a bone scan. It showed all.my major joints are loaded with arthritis. Will see my doctor next week for a diagnosis. We shall see! Lou in Pain
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I have been treated for sero-negative RD for 5 years I have inflammation and heat in my feet and hands, I have stifness in the morning and any time I get up from sitting or laying down. It actually feels like I’m walking on bags of water in the morning. And it hurts really bad. You can see some damage done thru x-rays. Also, Enbrel and Arava combination is helping. I have several other autoimmune issues.
I have had regular DEXA scans and have Osteoporosis. I had a Nuclear Bone Scan last week and it came back NORMAL! Now I am asking WTF? I’m so confused.
Anyone else have a negative Nuclear Scan but still have RD?
Thank you
Hi Ella, YES!!
You can read through these, especially second one in the list “New Reading..” https://www.rawarrior.com/tag/nuclear-bone-scan/ And the comments!! Lots of us have been there. Try to get a copy of your images & see if a second opinion can be had. Good luck.
Please can someone tell me if I had an Isotop Bone scan showing increased uptake in both hands ,wrists and elbows. This exactly where I have been experiencing awful pain over the 2 years. What does this mean? Is it RA or Fibromyalgia?
Hi, all the way from Australia! I turned 29 on the first of February, 5 days later I had this incredible pain in my neck that still hasn’t left. That is where my RA journey began.
Fast forward to the better part of a year, and I am still in pain and not much closer to relief.
In relation to your article on bone scans; I have recently had one. All other tests have been negative, with the bone scan and my (Jan 11th) MRI of my right hand, they are hoping to differentiate between fibromyalgia or an inflammatory disease. Happy to answer any questions you have.
Nice to talk to you,
Regards,
Michelle
Hi Michelle.
Sorry for the delay in getting back to you.I’ve only just been alerted to your response. Thank you.
I would like to know if the MID results you are awaiting differentiated between Fibro or RA.
I’m frustrated as the pains are only ever in my hands wrists elbows and shoulders. Yes I feel exhausted and an I feel an wellness I can’t describe . I’m not tired.
I’m on Amitriptyline,Duloxetine,Gabapentin 900mg 3 times daily Paracetamol and Codiene.
But no one seems to be treating the evidence with is in the Bone Scan. I wish I could afford to see someone privately. But my Benefit has stopped ,so it’s only my husband’s money coming in. I’m in the middle of my 2nd appeal. Most days I’m contained to my bedroom ,unable to washed or dressed infill 2 or 3 in the afternoon.
I’m sure there are so many more people out there suffering as I am. I’d love to hear from you. Thank you.