Thursday, August 27, 2009

Blood Tests for Rheumatoid Arthritis, part 2

Substantial numbers of RA’ers have “normal” test results

In my last post, I posed the question: Is There a Blood Test for Rheumatoid Arthritis? I told you that the answer is yes – and no. I went on to describe the “yes” by summarizing four principal blood tests used in diagnosing Rheumatoid Arthritis. Now it is time to elaborate upon the “no.”

I found this startling:

You may already know that there is not a blood test to definitively measure Rheumatoid Arthritis. No blood test can be used to precisely diagnose RA in all patients. But just as importantly, there is not a test which can reliably gauge the degree of RA within a patient.

But, wait, it gets more interesting:

The most thorough study of the usefulness of these tests was a large study conducted in both Finland and Tennessee. Almost 2,500 patients were studied over a period of 25 years. The CRP, sed rate (ESR), and Rheumatoid factor (Rf) were all monitored.

Look at some of the results. ESR was normal in 45% (Finland) and 47% (Tennessee) of patients. CRP was normal in 44% and 58%. And all Rheumatoid factor (Rf) tests were negative in 38% and 37% of patients.

Why does this matter?

Doctors commonly use these three tests to “monitor disease activity.” That means they are looking to these numbers to show whether the disease is active and whether a patient’s current treatment plan is adequate. Some doctors are more reliant upon them than others. I have met one rheumatologist who says that he relies upon them completely.

So read this carefully:

Many RA’ers experience plenty of active and damaging Rheumatoid Arthritis while one or all of these indicators are “normal.”

Here are a few cases in point:

~ “Sometimes also patients with rheumatoid arthritis have low CRP response in relation to the severity of the disease.” Axis-shield

~ “By the same token a normal sed rate is meaningless in a patient with known SLE if they are having symptoms of a flare." (Sounds like this rheumatologist considers the lab test pretty useless to measure flares in Lupus.) Nathan Wei, MD, FACP, FACR

~ “However, a low CRP level does not always mean that there is no inflammation present. Levels of CRP may not be increased in persons with rheumatoid arthritis and lupus. The reason for this is not known.” University of Southern California

~ “Many people with active RA have inactive values of ESR/CRP and many with inactive RA have active values.” Journal of Rheum.

~ “Both ESR and CRP were normal in 33% and 42% of patients” in the large study mentioned earlier. Journal of Rheum. abstract

What is the bottom line?

Only a small percentage of RA’ers actually had abnormal results to all three blood tests (ESR, CRP, and Rf) in the huge Finland / Tennessee study. “All 3 tests were abnormal in only 28% in Jyväskylä (Finland) and 23% in Nashville (Tennessee).” The authors of the study concluded: “Normal ESR, CRP, and RF are seen in a substantial proportion of patients with RA at this time.” Journal of Rheum. abstract

There is hope.

I had already spent many grueling hours researching for this series when I happened upon an article entitled The Many Myths of Erythrocyte Sedimentation Rate and C-Reactive Protein. I was thrilled to find a rheumatologist who holds the following viewpoint. “Learning when to ignore a test and when to rely on it lies at the heart of good medical care… It is, perhaps, time for more research about testing and measurement in clinical practice.” I recommend the article in the Journal of Rheumatology by Frederick Wolfe, M.D.


Robin said...

Have I told you lately that I LOVE YOU!!! :-)

Anonymous said...

Thank you for researching this information. For the last year I have had the symptoms of RA but all of the tests mentioned come back normal so I have been ignored and not yet diagnosed. I feel like I'm losing my mind sometimes. I'm going to a doctor 3 1/2 hours away to try yet again, to find out if this is indeed RA or not. Even though I am not diagnosed with RA it is encouraging to read your blogs. Thanks again. Sarah

mallen said...

Hi Kelly, Your posts are so informative and I really appreciate it. I don't know if you received my second email, but I thought I would copy it here just in case:
I hope you are having a lovely holiday. I must have been nice to meet another fellow RAer. I really enjoy your posts. I don't find that I'm that eloquent... ;p
I'm not exactly sure of everything my rheumatologist thinks is weird. I am sero-negative. I do have swelling, but not typically red and hot to the touch. However, I have had an CT scan of my hands and it shows damage. I may also have felty's syndrome. Have you heard of this side effect of RA? I guess only about 1 % of RAers develop this side effect. I have very low white blood count (which limits my usage of methotrexate. I used to take 10, but had to be reduce to 6 weekly because of my count) I have quite a few nodules, and slight enlarged spleen. My symptoms started when I was about 15 but didn't really develop until I was in my mid-twenties. It really seemed to slowly materialize. I just didn't wake up with it, it was very gradual, which isn't the case with my RAers.

Kelly said...

Thanks for the praise; I just feel like we have to give our all to get somewhere with this thing.

Mallen: I thought I replied to that email. Hmm? I will go ck that out.

V said...

It was helpful to read this and I appreciate your putting it out there. It took over three years from when my RA became really disruptive and when I got a diagnosis, mostly because my ESR, CRP, and RF were in the normal ranges or very close.
One rheumatologist told me flat out I didn't have RA and I had a strange genetic disorder and would just have to live with the pain; also that I was really just being a baby...the your a crazy young female so just take two asprin and go away treatment. Thankfully I didn't give up as a year later I was in another rheumatologists office, in far worse condition, and he described the whole progression of my disease as relatively classic. It started out slowly in my teens, masquerading as tendonitis or ligament issues around my joints....mysteriously not helped by any of the treatments. Then in my late teens and early 20's it started to get much worse, until by 21 it was all I could do to go to work at my desk job and go home and fall in bed. Yet since no ESR, CRP, or RF came back drasticaly abnormal, no diagnosis until late last year (I am now 24.)I wish more doctors were aware that the ESR, CRP, and RF are not infallible proofs of RA, but that they have to actually see thepatient in front of them and look at history as well. Probably more to it as well, but I know in my case it could have helped.

Kelly said...

You are still so young. We all are!

But, Hey!! This is NOT just about diagnosis.

They are using it for determining our treatment, too. This is the critical thing: we have to get them to treat the patient, not the test tube.

My last RA doc did not even take a history. He said the those tests are all he needs to see.

V said...

Thankfully my Rheumatologist only uses those tests if they provide useful information. If they show nothing, they show nothing and he continues on with treatment. I am blessed :-) If only he weren't an hour away....but regardless Doctors need to see the patient. I understand they see hundreds of them, they are overworked, and have to jump through crazy hoops to keep insurance companies happy, but despite that I still expect my doctor to SEE and HEAR me when I have an appointment because it is my care. I am blessed to finally have a PCP and an RA doc that listen and hear me and treat me as a whole patient not just as a test result or a statistic or as someone to be rushed in and out so they can document the appointment. But I know, from seeing enough doctors who don't listen and who treated my test results, that they don't all do this...hopefully as mroe research showing that these test results are borderline worthless comes out more doctors will be aware and may think about it, but until then I hope we can all be our own advocates by not tollerating doctors who only see the tests...if that is possible (I know it is well nigh impossible sometimes given the limited access to I said I drive over an hour to see mine I know many others go much farther) further scattered thoughts :-)

Wren said...

Hi Kelly,
Thanks for the very informative post on RA tests -- and for this blog. I ran across it while visiting RA Central. It's great to finally find a community of people who also live with RA.

I'm 52. I was diagnosed with RA when I was 31. Went through more than 10 years of simply awful pain, and then the disease went into remission. It's back now, though so far it's not as bad as it was then. I'm seeing a rheumatologist and taking Arava and sulfasalazine. The doc says they're helping, judging by the bloodtests. I just have to believe him.

I've been lucky in that so far, I've not had any deformaties, though I was disabled frequently during that first 10 years with the disease. It doesn't slow me down TOO much right now, so fingers are crossed.

Nevertheless, this is a very lonely disease. So many people don't understand it at all -- they think only elderly people get it, and they have no concept of the pain and disability it can cause. Thank you for starting this blog. You're an angel, you know?

Aimee said...

I'm learning so much from posts like this. Thanks!

Jenny said...

I feel like I've been reading my own many stories seem so familiar to me. I've had drs ignore symptoms because the blood tests weren't positive AND have had a rheumatologist ignore positive blood tests because she didn't think all my symptoms were present!! Oh, so frustrating.
I have a follow-up appointment on Monday with my new doctor (who I love)and have lots of questions for him. I love the view point you just discovered, Kelly......the heart of good medical care...That's the key and unfortunately for many, that's hard to find.
Also, if many of you don't keep a journal, I would encourage you to do so. You don't have to let anyone else read it!! My husband has asked me to read it to him on occasion and I think it really has helped him understand how I am feeling. Also, some of the good days run together with the bad days and they are hard to keep up with so a journal really helps!

Anonymous said...

Hi Kelly,
I hope you realize how much your time and research help alot of us. I was dx,d with lupus first over 10 years ago, I stayed with the same rhum. for years and he said it was MCTD, fibro. syogren's and then R.A. He never tried much new because my stomache always botherd me so he just kept me on the steriods forever. I tried several other doc who all gave me different dx, now I have found a rhum. that I like he says lupus is under control that it is RA, but even he confuses me when he says it's probably mostly fibro than starts me on an RA med. Rituxan. I also hurt in all my joints and swell but I don't get hot or red. It really makes you feel like your going crazy, I know what I feel like but thier tests and changes make me feel like it's all in my head. I just listen to myself and trust how I feel and what I know is going on. I just wanted to tell you I appreciate the time it took to explain what we all go through. Jeannie

Anonymous said...

Hi Kelly,
Thanks for all this information. It's nice to see that what you are experiencing is there in others as well. My first rheumatologist refused to diagnose me with RA because I didn't have abnormal sed rates and CRP tests along with the high RA factor. Then I found current Dr. who by using ultra sound od joints documented the joint erosion in hands, wrists and feet. Since I have only been on the current meds a few months, can't really say how they are doing -- I have good and bad days!

Thanks for all that you do!


Wellescent Rheumatoid Arthritis Forums said...

That is a very interesting set of findings that you highlight. My wife has long been disappointed by the fact that the rheumatologist indicates that everything is normal and yet walking any distance is unbearable. I will pass along the information to her to poke the doctor the next time she visits him.

Thanks for sharing your personal findings.

Kelly said...

You are welcome. Your wife is so blessed to have you. I would love to talk with her some time! My email is rawarrior at att dot net.