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.

Is there a blood test for Rheumatoid Arthritis? Part 1

Yes and no. There are at least four. But, actually, there is none. Allow me to explain…

Do the tests pass the tests?

What are the tests?

1) Rheumatoid Factor

For the last few decades, Rheumatologists have relied heavily enough upon the Rheumatoid factor test that it is part of the American College of Rheumatology (ACR) guidelines for diagnosis. However, many Rheumatoid Arthritis patients do not have high enough levels of this antibody to be considered “Rf positive.”

Those RA’ers are referred to as “seronegative.” Sometimes, I think they are considered the stepchildren of the RA community. Too often, they are initially told by their doctors that they do not even have Rheumatoid Arthritis. Of course, that makes it impossible for them to receive that “early aggressive treatment” which the ACR is now urgently recommending.

The Rheumatoid factor is actually only one of the antibodies which can be found in people with Rheumatoid Arthritis. I think it got to be the one called “Rheumatoid factor / Rf” because it was the first one identified. It is an antibody to immunoglobulin. It was discovered in 1940 using sheep blood cells.

Another problem with the Rf test is the number of false positives. At least 2% of the general population test Rf positive.

2) Anti- Cyclic Citrullinated Peptide

The anti-cyclic citrullinated peptide is another antibody (immune protein). It is directed against certain amino acids (peptides) containing citrulline. It is often called the anti-CCP.

The anti-CCP has excellent prognostic value because it is strongly associated with more aggressive forms of Rheumatoid Arthritis. This is also a more specific test, which means that, if it is present in the blood, there is a 90-95% probability that there is RA. And CCP antibodies are often present in blood years before symptoms develop. It could be used to pursue early diagnosis for the all-important “early treatment.”

3) Sed Rate

The erythrocyte sedimentation rate is also called the sed rate or the ESR. The sed rate is a simple screening test. Blood is allowed to settle in a test tube for one hour. The reading or “rate” is the number of millimeters of red blood cells that fall to the bottom of the tube in one hour.

The sed rate is considered an inflammatory indicator. High rates often correlate with inflammation. An extremely high sed rate is often the first indicator of a cancer tumor, for example. However, a sed rate itself is not diagnostic, so it usually leads to more tests.

Sed rates can be unreliable unless the blood is handled properly at all times. There are also several conditions other than inflammation which can influence the test results. High sed rates are considered strong indicators, but normal ones are less conclusive.

4) C-Reactive Protein

The C-reactive protein is often referred to as the CRP. This is also a non-specific marker of inflammation. High results indicate acute inflammation. CRP’s are also being used as a measure for heart disease.

However, many physical conditions can either raise or lower the CRP. The patient’s diet or medication regimen can alter a CRP result. There is also a more sensitive version of the CRP test, called the “high sensitivity C reactive protein assay.” (We will have much more on the CRP in the next post!)

Are these tests adequate?

Next time, we will look a bit deeper. Exactly how accurate are these tests? How many RA’ers fail them?

A few footnotes:

Book: Rheumatoid Arthritis by St. Clair, Pisetsky, and Haynes;
University of Maryland Medical Center;
Abstract from ClinicalRheumatology;
American Family Physician

Is There a Typical Rheumatoid Arthritis

Complications to understanding Rheumatoid Arthritis

Rheumatoid Arthritis is a complicated disease. I am not speaking of symptoms, medications, and lifestyle changes. I mean mechanically speaking – on a molecular level. It is complex and multi-level in its schemes.

That is one reason that experiences vary so greatly between RA patients: Which joints are affected? How many joints? How quickly does it spread through the body? Which other body systems are affected? How much destruction is there in the joints? Are additional autoimmune diseases involved? How does the Rheumatoid Arthritis initially present (what I call the “onset story”)?

What is typical Rheumatoid Arthritis?

Last year, my rheumatologist began to say that my Rheumatoid Arthritis was beginning to look atypical. I did not understand that since the only RA that I knew was my own. Around that time, I began to dig in to investigate what is the typical Rheumatoid Arthritis experience.

I wanted to do the research for myself. WHAT is typical? I read everything I could find.

I have read several books and what is called “typical” differs from author to author. But, I also began to scrutinize narratives of RA’ers all over the internet. And I also have connected with many one on one. What I have seen and heard from hundreds of RA’ers has not fit nicely into the neat categories or descriptions of any author.

Questions need answers

Every little thing that I learn raises more questions. If you have been reading this blog, you have heard me raise some of them. Can Rheumatoid Arthritis be understood or cured without answering any of them? I do not believe so.

To read a few of the questions that I have already raised, see The Four Courses of Rheumatoid Arthritis, part 1 , Is This the Best Time to Have Rheumatoid Arthritis, part 3 , and What Makes Diagnosing Rheumatoid Arthritis So Difficult?

The only thing that I am certain of is this:

If there is any discrepancy between the experiences of people with Rheumatoid Arthritis and those who academically describe and define this disease, it is the descriptions that are wrong – not the RA’ers.

It is not that they got their symptoms in the wrong order. Shame on them for not doing their RA right.

It is not that they have fallen short by missing a symptom on the list. How could they be so negligent?

It is NOT that the patients have failed the blood tests. The blood tests have failed the patients. The tests have failed to sufficiently demonstrate the presence of the disease. That is not the patients’ fault.

Why is it so typical to have atypical Rheumatoid Arthritis?

This week, I have driven across three states hoping to find one small part of the answer.

What Makes Diagnosing Rheumatoid Arthritis So Difficult?

Why is it so hard to get a Rheumatoid Arthritis diagnosis? RA-ers ask me that all the time. Why don’t we watch the mini-movie and then we’ll talk?

Video on referrals for Rheumatoid Arthritis:




There are some familiar themes there:

Minimizing:

Rheumatoid Arthritis patients report that healthcare professionals often underrate their symptoms. Sometimes, it is as if doctors are hard of hearing. But, other times it can be worse: they can intentionally discount the patient’s descriptions of the disease. Did you hear the lady say that her doc thought her just a “neurotic teenager”? I know one RA-er who was sent to a psychiatrist instead of a rheumatologist. I have actually seen doctors scoff about RA.

Ignorance:

Astonishing as it is, even many physicians are unable to recognize Rheumatoid Arthritis when confronted with the symptoms. They may not know that many RA-ers are seronegative, like another woman in the video. They frequently have misconceptions of Rheumatoid Arthritis. Otherwise, they may rely too heavily upon the ACR’s 7 guidelines.

Under-diagnosis:

Concerning Rheumatoid Arthritis, misdiagnosis is consistently “under-diagnosis.” Doctors tend to look with skepticism upon portrayals of RA which sound dramatic or extreme. (Who could believe someone could live with this much RA?) This tendency can cause doctors to “miss” Rheumatoid Arthritis entirely, seeing instead less serious conditions.

Consequences:

Some patients in the video stated that they were made to feel that they or their illness was unimportant. While that infuriates me, I actually have more grave reasons to protest. This is about more than hurt feelings. Here are some other consequences:

1) When doctors do not accurately hear what Rheumatoid Arthritis patients recount, it results in delay of an accurate diagnosis of RA. Of course this means either lack of treatment or an inappropriate treatment. Remember the dear mum in the video who was forced into an exercise program to treat her RA? If she had had another condition, instead of RA, she might have improved. However, it made her worse BECAUSE SHE HAD FULL-BLOWN RHEUMATOID ARTHRITIS.

2) If symptoms are not accurately heard, they cannot be accurately recorded. This may hurt the patient’s position with future providers, with long term disease management, and with insurance issues regarding treatment options.

3) Rheumatoid Arthritis is believed to cause permanent damage even during the first months of being symptomatic. Patients are permanently harmed when doctors refuse to hear them and do not refer to specialists or begin treatment.

4) Finally, I believe that one reason scientists can’t find a cure to Rheumatoid Arthritis is that the disease process is not entirely understood. It is impossible to cure what we do not understand. Failing to listen only exacerbates this problem.

Bewildering, huh?

Dangerous thought: what if doctors were hired based on whether they could find the right diagnosis… like plumbers and electricians? Would that help?

Recommended reading: Diagnosing Rheumatoid Arthritis
RA Warrior’s RA
It’s Okay to Laugh if You Have Rheumatoid Arthritis

Functional Measurement of Rheumatoid Arthritis

It’s not only “Where does it hurt,” but also “What are you able to do!"

There are many ways to measure RA. Of course you’ve heard the pincushion jokes. But, blood work is the simplest way to get a picture of what Rheumatoid Arthritis is doing in a body. Sometimes x-rays or other scanning devices can detect damage.

Actual disability is more difficult to appraise, though. Certain symptoms such as pain, stiffness, and weakness are tough to measure. However, they are important indicators of disease severity and progression.

Some doctors might ask patients, “Were does it hurt?” or “How bad does the pain on a 1 to 10 scale?” But, there is another question which is just as important. It is, “What can you do?”

Over the years, doctors have developed several instruments to gauge the disability that Rheumatoid Arthritis causes. They include the Health Assessment Questionnaire (HAQ), the Keitel function test (KFT), and the Arthritis Impact Measurement Scale (AIMS). They attempt to record limitations in joint motion and difficulty performing certain tasks.

The goal is to have a more objective way to measure, record, and predict ability to perform the daily tasks of life. That is sometimes referred to as “Global functional status.” See image; click on it to enlarge it.

Patients are classified according to their ability to perform activities related to these categories: self-care (bathing, dressing, grooming); vocational (job-related tasks); avocational (pleasure or hobby- related tasks). There are four labels based upon which types of tasks a patient can perform.

Measuring functional capacity at the time of diagnosis of Rheumatoid Arthritis is important. It is a strong predictor for functional status later in the disease progression. The severity of the Rheumatoid Arthritis (as judged by functional status) is an even more accurate predictor of future disability than is the duration of the RA.

Believe it or not, poor functional status is even useful for predicting (long term) mortality in Rheumatoid Arthritis. I don’t point that out to scare you, but only to explain why researchers confirm how critical functional status assessment is to your treatment. It is vital to discuss your functional status with your doctors. It is an essential part of your care.

What should we do? We should carefully fill out any forms which our doctors provide which ask for details about what kinds of tasks we can do and how difficult it is to perform them. We can also compare that to what we were able to do in the past (for example, one year ago or before we changed medications, etc). We can even provide our doctors with 2 short lists:

1) Tasks which we can currently accomplish, indicating level of difficulty, or amount of medication required to do them;

2) Tasks which we can no longer perform.

On a less serious note, this reminds me so much of those kindergarten report cards for little tasks: She needs help to tie her shoes; she feeds herself neatly; handwriting is barely legible; cleans up well, but needs encouragement. Let’s hope ours also says: shares and plays well with others.

NIH citation Rheumatology journal abstract

I Failed the Rheumatoid Arthritis Control Quiz

My Response to WebMd's Quiz on Rheumatoid Arthritis Control - Can you tell my doctor?

WARNING: Sarcasm ahead.

WebMd sent me a quiz in my email box. I never do online quizzes. I heard they collect data for later use. Besides, my wrists and fingers hurt, so I have been trying to resist any pointless typing or mousing.

But if it is Rheumatoid Arthritis data, that might help someone some day. So, I made an exception and filled out the quiz. To my surprise, there was an instant diagnosis (reply). How nice! My other docs make me wait hours. Is the WebMdDoc (WMDoc) a real doc or does it just play one on the internet? Could I stay home and get my prescriptions from here…

Here is part of the answer WMDoc gave to me:

“According to your responses, you don't have good control over your RA symptoms. The condition is taking a toll on you, emotionally and physically. You may also worry about the future -- what happens if your symptoms get even worse?”

I did not try to reply to the WMDoc’s email. I know there are thousands of patients waiting to be next on the quiz. However, I will share some of my responses with you:

“Control”? I don’t have “good control”? Look, if I were in control, I’d tell the RA to get out of my body, out of my house, out of this world, and never show its horrible face again. Yes, WMDoc, I guess you’re right; I am not in control of the Rheumatoid Arthritis.

“A toll on me”? YA THINK? “Emotionally and spiritually,” huh? Yes, a toll higher than the Beeline to Disney collects each day. And how about tolls PHYSICALLY, FINANCIALLY, and RELATIONALLY? I am not sure you really understand my plight, WMDoc. Did they require any empathy classes at your medical school?

My “future”? Am I worried about whether the “symptoms will get even worse”? Uh, yeah… That’s why I am taking all these meds and seeing so many doctors like you. Thanks for mentioning that it might get worse. I do know that since I have friends who are worse off than I am. However, I do get lost in hope of a cure sometimes and it’s great to be brought back to earth.

Another excerpt from your reply:

“But now is the time to take action. It sounds like your current medications aren't doing enough. It may be time for a new treatment approach. See a rheumatologist -- or arthritis expert -- to see what you can do. With a good treatment plan, you can get your life back.”

I can see that paragraph is meant to be encouraging. Please forgive me if I sound picky, but I must question your choice of words again: You said, “You can get your life back.” I have heard that one before. Where did you learn that? How long did you really study Rheumatoid Arthritis in medical school? Was it summed up in one morning seminar?

It would take me hours to explain to you the truth about RA and whether I get my life back with “a good treatment plan.” Can I suggest a little blog I know? You could learn a lot about how Rheumatoid Arthritis actually affects people’s lives. Don’t forget to read the comment sections. There is a lot of valid data there too. Most of the folks who participate are real Rheumatoid Arthritis patients – they don’t just “play one” on the internet.

By the way, would you be willing to do a consult with my other RA doc? He says that my Rheumatoid Arthritis is under perfect control and that I appear to him to be doing fine and dandy.

How is Rheumatoid Arthritis Diagnosed? Part 2

Will I need a Patient Protection Plan?

Diagnosing Rheumatoid Arthritis is not easy. Living with RA is no picnic either. And writing about it is like untangling cooked spaghetti.

There is no single definitive test which has a clear positive or negative result for Rheumatoid Arthritis. But, I believe that the diagnostic process could be improved. And perhaps our collective effort will bring us closer to that goal.

First, is there anything that could make diagnosing Rheumatoid Arthritis any faster or less tricky? Is there anything that the American College of Rheumatology could do to improve RA diagnosis procedures? Second, what can we patients do?

Let’s talk about the guidelines (see Part 1). Many patients approach a rheumatologist with symptoms which do not initially satisfy the clinical requirements for diagnosis. Then, within a few months, these same patients are diagnosed with Rheumatoid Arthritis. Do we say that the patients should have had more obvious RA symptoms sooner or that the guidelines should be adjusted?

Look at one scenario: a patient presents with symmetrically inflamed knees, shoulders, and feet. She could easily fall outside of the guidelines because her hands are not yet affected. Hands and wrists are key to diagnosis by today’s guidelines. Many doctors do recognize the feet as equal to the hands in importance, but when they do so, they are stepping outside of the guidelines.

A patient can easily have three out of the seven symptoms on the list recognized by a doctor and fail to receive an RA diagnosis (yet) because symptoms develop in a different order in different patients. It has only been in recent years that the ACR has recognized that early diagnosis and treatment is important to alter the disease course. The guidelines were not developed by studying the onset (early stages) of Rheumatoid Arthritis.

Many of the visible symptoms of RA vary by individual and throughout the course of the disease. Many who “start out” seronegative (with a negative Rf test) are later seropositive. External swelling can be either extremely noticeable or very slight. There are even cases in which the arthritis is not symmetrical.

Some of the symptoms included in the guidelines are totally subjective, such as stiffness. Here, the key to getting the symptom documented toward a diagnosis is good communication. I don’t need to tell you about how well some doctors listen. Even if you have found a good one, you’ve heard the dreadful stories.

Fatigue is another highly subjective symptom. It is considered by many authors of books on RA (physicians mostly) to be a hallmark symptom of Rheumatoid Arthritis. However, fatigue is not even on the list of seven guidelines.

I realize that I am raising difficult questions (please see Part 1, paragraph 5). And the answers may not be easy or obvious. Many doctors are already reaching beyond the guidelines now by considering things such as an anti-CCP result, fatigue, muscle weakness, or Sjogren’s syndrome in diagnosis. These indicators are in the books; and they are part of most RA patients’ lives. The fact that many doctors go beyond the guidelines to look at extracurricular symptoms is proof to me that the guidelines need to be updated.

As I said in Part one, the “listening” problem has been solved with the internet. Doctors do not even need to listen well to patients to improve their understanding of us. The ACR can hire researchers to analyze and compare narratives of many thousands of RA patients who have used the internet to document their onset and diagnosis of Rheumatoid Arthritis. Perhaps, patterns would emerge which could enable doctors to more easily recognize the onset of RA.

What can patients do? If we are unsure of a diagnosis, we should ask for more tests. In extreme circumstances, it is even possible to extract fluid from a joint to examine it for compounds typically present in Rheumatoid Arthritis. We can ask that doctors listen carefully and document our symptoms as we report them. We can suggest doctors read some of the volumes of documentation that is available about RA on the internet, written from the patient’s viewpoint.

When the onset of so many is considered atypical, it is my opinion that a mold which does not fit is the thing that is wrong and not patients’ presentations. Why not use every test available to procure a diagnosis of such a complicated and poorly understood disease which has such devastating consequences? Why risk delaying treatment?

I had not planned to write about this for at least another year. I wonder if I can plead temporary insanity for having questioned authority so resolutely. Does anyone ever win fighting City Hall? I hope I will not need a witness pr– no, a PATIENT protection plan for troublemakers.

Of course my opinion is my own. That is part of what a blog is. Some days it’s like trying to untangle cooked spaghetti. Messy.

How is Rheumatoid Arthritis Diagnosed? Part 1

Why is it so hard to diagnose RA?

Rheumatoid Arthritis is a mystery even to doctors. The diagnosis is a subjective process even though many of the symptoms are clearly measurable. Every book or article I read says that it is difficult to diagnose. Why?

It is only in recent years this disease actually has a name and any identity at all. Rheumatoid Arthritis has never had a single definitive test to prove diagnosis. It was in 1987 that the American College of Rheumatology (ACR) adopted 7 guidelines, created by a committee, which are used in the clinical diagnosis of RA.

While there are seven criteria on the list, rheumatologists may diagnose RA if only four of them are present. They include symmetrical presentation of arthritis; arthritis of the fingers, wrists and hands; positive Rheumatoid factor blood test; morning stiffness; rheumatoid nodules; arthritis in 3 or more places; and radiographic (X-ray) evidence of changes.

Often, clinical guidelines use words like “suggests” or “indicates” diagnosis of Rheumatoid Arthritis. Doctors use these guidelines to decide whether a patient has Rheumatoid Arthritis. Two doctors can decide that a particular patient does have RA even if the criteria are not precisely satisfied.

Why do so many people with Rheumatoid Arthritis go months, and even years before getting an RA diagnosis? I recently met a lady who went to 13 different doctors (including several rheumatologists, I believe!) before finding her RA diagnosis. And, why are so many told they are “atypical”? Why do I meet countless precious people who have RA and are being treated for RA, but do not fit the mold of the 7 guidelines?

I am starting to wonder whether the ACR’s RA mold is getting moldy. It’s getting old already. Things have come a long way since 1987. Consider two things:

First, Medical Advancements:

There are medical tools which were not yet widely available in 1987. There are ultrasound and MRI machines, even small portable ones which can view the inside of the joints. There are also improved CAT scans and bone density scans.

The old Rheumatoid factor (Rf) test was only about 75 % accurate. Many people who are diagnosed with RA do not have a positive Rf. However, a newer test measures another antibody which is present in rheumatoid diseases called the cyclic citrulline-containing peptide. The anti-CCP test is about 90% accurate. There are other antibodies, too. And just recently, the possibility of another new test came over the horizon when another piece to the RA puzzle was found.

There are many other examples of advancements, but these are some which are glaringly obvious and can be understood even by laymen.

Second, the internet:

With the advent of the net, there is a vast amount of evidence about the specific symptoms and indicators of Rheumatoid Arthritis. I know there are a million quacky wacky websites out there. Not that! There are a substantial number of solid legitimate blogs and forums where patients have been documenting the details of their RA. Researchers never had such vast records available to compare and analyze.

A report by the Centers for Disease Control (CDC) found an average of 36 weeks between onset and diagnosis of Rheumatoid Arthritis. That’s nine months. Again, why? They state that “early disease recognition is challenging as only half of those who eventually develop RA initially present with features specific to the condition.”

Do they think there is something wrong with the way that “patients present” or with the diagnostic criteria? Why aren’t the “features with which they present” being considered specific to the condition? Remember, these are not just folks who they bumped into in the elevator; these are patients “who eventually develop RA.” What did they have during the first nine months before the RA diagnosis? Were they RA WANNABES?

The causes of Rheumatoid Arthritis are not known. The cure is not known. Accurate and prompt diagnosis remains elusive. Maybe the patients are correct and the criteria are inadequate.