Measuring Rheumatoid Arthritis Disease Activity
Did you ever go to the store for milk and bananas? And come home with frozen pizza and ice cream? Sometimes I spend a couple of hours looking for something and discover something else that’s worth bringing back to you. That’s how I found this ten year old article about the dilemma of measuring Rheumatoid Arthritis activity.
Differing perspectives on measuring Rheumatoid Arthritis disease activity
But first, who cares? You either have Rheumatoid Arthritis or you don’t right? Once you have a diagnosis, why measure anymore? That is how some doctors reason and there’s some advantages to it. The patient gets treated with DMARDs and less money is spent testing.
As patients report frequently here on the blog, there are plenty of rheumatologists who go to the other extreme. They “treat by the tests.” If lab results are in normal range, the patient is told that the disease activity is “controlled,” or even in “clinical remission.”
Doctors may produce a type of disease activity score (DAS) from counting certain joints or may rely on a variety of methods to assess disease activity including blood tests, x-rays, or patient questionnaires. If you are not an RA patient, that sounds pretty straightforward. But if you have RA or if you’ve read many of the comments on this blog, you know it’s much more problematic.
- Blood test results are commonly normal even in patients with painful symptoms and continuing RA damage.
- DAS joint counts can be subjective. Studies show doctors consistently rate disease activity as lower than patients do.
- Ultrasound imaging may not reliably monitor Rheumatoid Arthritis activity because of variability of equipment and subjectivity of technique.
- When x-rays do show damage, it is only in retrospect. Plus they only reflect bone damage while RA affects soft joint tissues, veins, arteries, or organs.
Difficulty of measuring Rheumatoid Arthritis disease activity is not new
Ten years ago, some Canadian researchers seemed to understand our predicament perfectly. I found it astonishing to read this old study about near‐infrared spectroscopy (NIR):
“Although RA has traditionally been thought of as one homogeneous disease, it has become increasingly obvious that there are many subgroups within this spectrum… Certain early prognostic features of patients are suggestive of more aggressive disease. These include specific genetic haplotypes, female gender, high rheumatoid factor titres, multiple joint involvement and early erosive damage. However, no single feature predicts the severity of disease or the extent of involvement at a specific joint… Determining synovial involvement is often complicated by the discordance that is commonly found between the detection of swelling, tenderness and temperature of a joint with the plain radiographic assessment, which may not yet show any underlying damage… Some studies, although using more invasive techniques with biopsies and magnetic resonance imaging, suggest that the clinical perception of joint involvement may be underestimated and quite inaccurate. It is therefore important to try to find modalities to detect early changes that are accurate and easy to perform.” (Emphasis added.)
What hope is there for measuring Rheumatoid Arthritis disease activity?
Those statements sound like they came from this blog. It does astonish me how few seem to understand these points a decade later. Science will catch up with RA eventually. The near-infrared spectroscopy did not become a standard technique and I cannot find recent studies using it. Does anyone know why? The nuclear bone scan (scintigraph) is another method that we hear about periodically. Stay tuned for more on that one very soon. That’s what I went to the store for in the first place.
Recommended reading:
- Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity
- Predictors of Pain in DAS28 Remission
- 10 Dumb Questions About an MRI for Rheumatoid Arthritis
I had the nuclear bone scan right at the begiining of my diagnosis. It showed the joints that were ‘lit up’ by inflammation. I was lit up like a christmas tree according to the tech and my rheumy. I cried…but whenever a new joint starts hurting I call up the scan on my computer and viola! there it is shining bright white, or maybe it was only just starting and was not as ‘bright’ as the more severly affected joints. A very useful tool.
Thanks, Molly. From all I’ve read, that’s when the scan is effective – in early RA. And the “Christmastree” line – I hear it from so many!
Interesting. I’m not sure if anyone ever picked up this idea to commercialize it. I must point out the distinction between getting a patent for a technology/device and getting FDA approval for the commercialization of such a device or the promotion of use of a device. In the grand scheme, getting a patent is realtively cheap. Getting someone to take an idea and to go through all the studies and regulation to market the device takes a lot of time and money.
Would love to find out what happened if you have time to look around. LOL. 😉
If you can see the joints in your hands becoming more twisted and mishapen and enlarged on almost a daily basis, wouldn’t that be a sign of progression/activity? If the stiffness continues to more and more impair your ability to use your hands or to walk “normally”, wouldn’t that show activity? I’d sure think so.
Also a new symptom — daily low-grade fever and widely fluctuating temperatures. Is that R.A.?
I’m rather new at this and these are questions I’ll ask my doctor at our next visit. Would love to hear your and your readers’ take.
Thanks so much,
Becca
Dear Becca, I hope you are still reading. I was offline & I’m catching up reading all comments, trying to reply. YES, the daily low-grade fever is typical RA. And yes, I agree with your other questions too. Personally, I believe fever should be checked although it seldom is used. There is a post on it here at this link – click here. There are some comments there that might help too. Use the search box if you’re ever looking for something on here.
Kelly, Your blog post is timed quite well with a post from another blog I read. Here is a link to that blog:
http://pipeline.corante.com/archives/2011/01/14/fishing_around_for_biomarkers.php
In the past week of so you had a post about improving diagnosis and quicker diagnosis to your post today about disease activity. The link I gave touches on why this can be such a daunting task.
Thank you. Good reading.
One way we can all contribute to better diagnostic measures and treatment is to join the new research study called AIR (Arthritis Internet Registry. Join at: http://www.arthritis-research.org/join-research/joining-ndb-research-rheumatoid-arthritis
This past summer the NDB (NDB is a research data bank for the study of arthritis and rheumatic conditions)and the Arthritis Foundation teamed up to create the new research study called AIR (Arthritis Internet Registry).
From the website: Patients in AIR fill out questionnaires every 6 months along with everyone in the NDB, but in addition they’re being asked to donate their blood. While we continue to see how all forms of arthritis are affected by different treatments, we’re hoping to find out if there are clues in the blood that would tell physicians which drugs would work best the first time. We’ve just started this project along with researchers at Harvard Medical School and Quest Diagnostics. As we get more participants and questionnaires, expect to hear more about ways “biomarkers” in our blood can help.
NDB is a research data bank for the study of arthritis and rheumatic conditions. The NDB project collects data on rheumatic conditions directly from persons who have these problems. The goals of the project are to advance knowledge about the causes, outcomes, costs, treatments, and results of treatments related to rheumatic conditions. Another important goal of the NDB project is to stimulate research and study by health professionals by making NDB data available for medical research. People volunteer to participate in research for a variety of reasons. The primary reason people give for NDB participation is that they want to contribute to medical research that may help others with their disease. With a debilitating disease like arthritis or other rheumatic conditions it can sometimes be difficult to volunteer in a traditional setting. NDB research allows you to volunteer in an important way. By learning about your condition over time, we hope to give researchers the tools to improve treatment for people with rheumatic conditions and improve their quality of life.
I was about 68 when I was diagnosed, and had already had Chronic Fatigue syndrome and Fibromyalgia since the 1960’s. There is only one Rheumatologist within 80 miles of my home, and his tests showed perfect, spherical holes in the knuckle joints of both hands. However, I cannot take any of the prescribed medications. I am depending on Acupuncture for relief of pain and for the healing of my body, along with Chinese herbs , I was doing fine, until this winter, when I have had one horrendous flare after another. Believe it or not, I found that holding a Mexican Hairless dog on your chest, or in your hands, relieves pain and helps one sleep. These little dogs have been used for healing by indigenous peoples for many years. I’m keeping my eyes open for one.
Adele, From what I’ve read, the little holes in your hands called erosions cannot be treated or slowed with the treatments you are using. Hopefully, your disease will not be aggressive to cause much more damage. I have read that low disease activity is common at your age, so let’s hope for that to be true. There are some posts on natural healing or cures for RA here if anyone is interested. I realize patients have different opinions. My own grandfather did rely on accupuncture for pain relief in his sixties after his RA was more calm and he could no longer take any steroids. He still required knuckle replacements though.
I’m happy for you that you created this site!! I’m 50 and have severe RA for 5 years…..you may want to try Actemra…I’ve been on it for 12 months and it has saved me from the extraordinary pain of this disease. Yes…no one believed me. My original doctor actually pushed me and my husband out of the office when I was crying (which I am not inclined to do!) and told her my hand was in excruciating pain (and had blown up twice the size of my other hand)telling me, “It will pass”! Mine came on furiously and I was twice misdiagnosed with a broken clavicle and a sprained knee. I had to diagnose myself and my NPA agreed with me. I had crazy doctors putting me on huge doses of prednisone but the combo of Methotrexate (2cc), prednisone (3mg) and Actemra has given me my life back and my wonderful doctor (Dr. Sara Johnson) got me here to this happy point. The sadness and grief of feeling trapped in a disease was terrible and I had to deal with it myself as I am not a complainer. And the pain – not one relenting day – for 4 years was almost indescribable and challenging mentally….I hope you are feeling better and perhaps you might try what I was given with wonderful results and NO side effects! (so far so good)….Deb : )
Deb, is that 50 mg of methotrexate? There is usually 25mg per cc. I’m just curious because I never met an RA patient who took over 30mg. And the max dose for most is considered 25 mg.
Yes, I’ve tried Actemra. It did not work on my RA unfortunately. There are some posts on Actemra here on the site – click here.
Thank you for this site. I had RA for many years before it was diagnosed properly. When I was advised to go to a rheumatologist by a friend with RA my primary doctor ( who I fired) yelled at me and told me I did not have it even though my sed rate was through the roof. I have pain of some sort most of the time but because I am determined to function and have a life , my doctors often make light of the pain. After 40 years its tiring.
Constance, I’m glad you finally got an answer. yes, 40 years does sound tiring.
Constance, I saw part of my story in yours. Except I figured out with the help of Dr google that I had RA. Kelly was not up and running yet. My GP was the same although he did not do any blood tests. He said it was OA and I was his healthiest patient, I shouldn’t complain. He finally did refer me to a rheum, very begrudgingly. It’s sad to think of so many who go through this when we are indeed very sick.
I was diagnosed with Palendromic Rhhuematism at age 18 while serving in the USN. Two weeks in the hospital and every test imagenable finally produced that diagnosis. I had little flair ups until age 60. The pain would move around from ankles to sholders to knees etc. I had low blood pressure until then, it climbed. I took aspirin in big doses which helped keep pain almost at bay. Finally my Dr. prescribed a NSAID, which I took for 4 months. I went in to hospital with blood in my stool, diagnosed bleeding ulcer, operated on and put on Previcidd to help keep acid down. I was then told not to take NSAIDS or aspirin. For the pain in shoulders, knees and ankles I was told to take “joint juice” which promply made me sick. So at age 68 I woke up in the hospital. I had a asectgion of the Aorta, I had been on the ventilator for three weeks. In
Feb 2005 I applied for disability from the USN which was promply denied, mainly because I walked in to the hospital to have my exam.
No one understands the pain that I go thru when you been diagnosed alergic to all of the best pain meds. I am currently in my last appeal for disability with the VA and because I do not go to the doctor everytime I feel pain, there is veryi little hope of every getting disability. When I read your article on AOL recently Kelly, I thought wow that is me, no one believes I have pain and that I just take it until I’m wore out. Thanks for the article Kelley.
Good to hear from you Richard. Thanks for sharing your story. If you ever want to write a more complete version, we have many onset stories at the RA Stories tab and more men are always especially welcome. That tab explains the reasoning and process. Good luck to you.
I love this site! Thank you. I was diagnosed with RA approximately 2 years ago. I get so aggravated with my Rheumatoid doctor. I will have awful flare ups at home and I am in so much pain. By the time I get an appointment with the doctor the flares ups have subsided, thus, he thinks that I am not really in that much pain. My levels are very high for RA and it is progressing. I have so much pain in my feet to where they turn purple. I can barely walk a block without my hips being in pain. I am 52 years old. I know my destiny with this disease but I will continue to fight the battle and win the war. Thanks again for this website!
Thank you, Suzi! It’s good to hear from you. One thing I often tell patients is to take pictures at home when it looks bad. I think doctors should believe patients, but if it takes a picture, then it may help. Doctors who don’t take RA pain / flares seriously are a big part of the problem. Like you, most of us do have a very high pain threshold from what I’ve read – there is a post on that. Check the Tags List for “Pain” to see other ones.
thanks for dis site.. I dnt knw if i have Rheumatoid arthritis but in my small joints i have some vague feelings n its not actually pain. After some movement it feels better. And this feeling it moves from one joint to another..my sed rate was normal 5 months back
Monitoring disease activity is tricky. My diagnosis of RA was not in question because of positive RF, CCP and erosions. The level of disease activity at this stage is what is in question and my doctor’s conclusion isn’t the same as what I’m experiencing. From my perspective, the RA is progressing. I watch my feet and hands becoming more deformed. Hips and shoulders are in constant pain as is my neck and low back. I cannot curl the toes on my right foot anymore. I cannot go up on my toes at all and cannot walk very far- the pain, stiffness, lack of coordination is always present even with medication and moving as much as I can. I’ve had 2 ultrasounds and both are consistent – one early on and one recently. Both show the erosions of hand and feet joints plus continuing synovitis and hypermia despite treatment. My recent bone scan was supposedly completely normal – NO signs of inflammation even though when I was watching the screen I could see areas lit up that I didn’t think were supposed to be. I am having an MRI of the neck and spine because on 2 x-rays degenerative disc disease is there and progressing. I wonder if the MRI will come up normal *sigh* even with the x-ray results. I have not had visible joint swelling on most exams with doctors except for when first diagnosed and in the first few months. ESR and CRP have always been normal. I find the inconsistencies in the results of the tests frustrating and feel I am being questioned a lot. I know this isn’t uncommon but I find it challenging emotionally. If this were cancer, there would be none of this looking at a person suspiciously. How do y’all handle this? Also, my other question is: Has anyone else had positive ultrasound findings for inflammation and erosions and then negative bone scan results? This makes no sense to me. Thanks SO MUCH for this website. As many have said, I cannot imagine trying to deal with RA without the support of others online.
How fast does this disease progress? Since I was diagnosed in January several of my toes are turning sideways and curling under with bumps on the joint. My doctor will be addressing the next course of treatment which he told me he would like me to try Biologics. I am currently on 7.5 mgs daily of Prednisone and 10 mgs Mtx which he now spilit into two doses Wed and Thurs due to stomach issues and that has been helping.