There is so much misinformation about rheumatoid arthritis.  Most people are completely ignorant of how severe RA can be. Including many medical professionals.  I was once told by a podiatrist that “rheumatoid arthritis is not a serious disease anymore.”  

Oh really?  I was in full body mega flare and had been for two weeks, and my kidneys were close to failing at the time…and they disagreed!    RAmythsbedunked

There are a lot of myths that are slowly being dispelled, but a few of my favorites are below:

1) Seronegative RA is milder than seropositive disease. 

According to Dr. Jonathan Krant, MD, FACP, CreakyJoints’ Medical Director, this is a  common misperception: “The presence of a positive IgM RF correlates mostly with ‘extraarticular’ manifestations of disease (e.g.,  rheumatoid nodules) than disease severity per se.”

Seropositive RA means you have a positive Rheumatoid Factor (RF).  Rheumatoid factors are a group of proteins that are indicative of RA but not diagnostic in and of themselves.  Around 20-30% of patients have active RA but no RF in their blood. This is what is termed ‘seronegative’.

Rheumatologists used to believe that seropositive disease was more severe, with poorer prognostic factors, and many still do.  As a consequence, patients who are seronegative are often undertreated because of the belief that seronegative disease is milder.  It is often harder to get a diagnosis because some doctors still believe that having a negative RF rules out rheumatoid arthritis.  Therefore patients are not referred to a rheumatologist and treatment is often delayed, and sometimes withheld completely.

Early, aggressive treatment gives the highest chance of putting disease into remission.  Preferably treatment should start within the first six months of symptoms.  Dr. Krant notes that rheumatologists frequently initiate therapy with glucocorticoids and DMARDS within the first two weeks, particularly in patients with ‘robust’ disease. Biologics are added at the 6th to 12th week pending response to initial therapy. This is rarely the case with seronegative arthritis because it is not recognized for what it is – rheumatoid arthritis.

And many people with seronegative disease do have active and aggressive arthritis, with persistent, erosive disease.

I am seronegative. It took four GPs before one referred me to a rheumatologist.  Although I was in terrible pain and had classic RA symptoms, my first rheumatologist declared my disease ‘mild’ based on my seronegative status.

He was wrong.  A year later, looking at my nuclear bone scans and ultrasounds which showed active RA everywhere, he actually apologized to me, for underestimating my disease. The diagnosis is typically clinical, without need for diagnostic imaging (other than plain films, which give a ‘baseline’ portrait of marginal erosions and joint space narrowing)– used to assess the quality of clinical response to therapy.

2) If your acute phase reactants are normal, you don’t have inflammation.

Many doctors are confused by patients presenting with painful joints and describing classic inflammatory arthritis symptoms, but their bloodwork shows normal acute phase reactants (APRs).  Acute phase reactants are a class of proteins that are usually elevated when inflammation is present, and normal when there is no inflammation.

The blood tests commonly used to test inflammation levels in arthritis are Erythrocyte Sedimentation Rate (ESR)  and C-Reactive Protein (CRP).  They are not specific to RA – something as simple as a cold or as serious as cancer can elevate your APRs. Platelets are also markers of acute inflammation – perhaps not as reliable as the CRP or ESR, platelets and fibrinogen also convey a picture of disease activity which complements the clinical assessment (tender and swollen joints, erosions on plain film etc.).

In rheumatoid arthritis they are commonly used as an indicator of disease activity. But according to a recent study  http://arthritis-research.com/content/16/1/R40  up to 58% of people had normal APRs, but did have active disease and inflamed joints. Dr. Krant agrees: “Never rely on a blood test to substitute for clinical judgment.”

Some doctors rely wholly on this bloodwork, when in fact it is NOT a good indicator for disease activity, or lack of.  They may declare a patient in remission, or diagnose fibromyalgia, or hypochondria or depression based on this bloodwork, when the patient may actually have active disease and require more aggressive treatment. The astute clinician will recognize disease remission – frequently the response to therapeutic intervention – and not search for alternative explanations in patients with established disease.

Inflammation levels are not always accurately reflected by ESR and CRP levels.  My blood markers are always normal. Even I have wondered at times if my diagnosis is wrong. Especially in concert with the fact that I don’t respond well to any treatments, except prednisone.  However my recent surgery on my shoulder proved beyond a doubt that I have active RA. (Of course, this is one individual’s experience, and may not be generalized to others with similar disease presentations).  There is no better ‘proof’ than a surgeon seeing it with her own eyes.  There is no doubt that I have active disease, and normal APRs.

Ultrasound is a far better indicator of disease activity than bloodwork. To this point Dr. Krant says, “Possibly, yet it is not universally embraced, partly because of cost of goods, and lack of standardization. She makes reference to color flow Doppler, which is both sensitive and specific for synovitis in the rheumatoid joint.”

3) Rheumatoid arthritis is the same for everyone.

Rheumatoid arthritis is different for everyone…very different!  There are so many variants of rheumatoid arthritis, it is more like several diseases with some commonalities.

Some people have mild RA and maybe have pain once or twice a month.  Some people are in constant pain and completely disabled.  Everyone deserves support, no matter what their level of disease.  But some people do have far more serious disease than others.

RA is classified as mild, moderate or severe (dated classification) depending on a few variables, including bloodwork (as discussed, not always reliable!), number of swollen or tender joints, and extra-articular manifestations of disease (more typically used). Extra-articular meaning RA does not just affect the joints, but internal organs as well.  RA can damage the heart, lungs, kidneys… anywhere there is connective tissue, RA can attack.  Eyes are a common site for RA related inflammation and RA can lead to blindness.

So at one end of the scale you might have a person who has a one or two joints that flare every month or so.  They require nothing but NSAIDs and/or maybe a mild DMARD like plaquenil for treatment, and live a relatively normal life.

At the other end of the scale you might have someone who is completely disabled, cannot work, cannot function without help, requires narcotic pain medications, chemotherapy, biological drugs with serious potential side effects, (not as bad as frequently thought – if monitored, combination therapeutics or biologic monotherapies are often effective and lacking in toxicity has damage to their heart, lungs and kidneys, and is slowly going blind.

These two people will have very little in common even though they have the same diagnosis.  And of course most people fall somewhere in between, with varying degrees of severity and varying degrees of control.  And for each patient, RA can change from one day to the next. I have a few friends who had mild RA for many years, and then it suddenly awoke with all its fury, disabling them quickly. Frequently associated with an infectious precipitant, leading some to think that RA is an infectious disease, a genetically-determined aberrant response to an unidentified infection, such as chlamydia or mycoplasma.

Unfortunately the public perception of rheumatoid arthritis is more like the first example – that all RA is just a mild disease, with a few aches and pains now and again.  Take an ibuprofen and all is good.

Often people suffering with serious disease get little support because those around them just do not understand how severe a disease RA can be.

Bottom line?  Just because one person with RA can climb mountains or run marathons does not mean we all can.  Or we all should.  I love that there are people out there Racing for a Cure and staying physically active and fighting their disease that way.  I was once one of them, and I hope to be one of them again! (OK, maybe not a marathon…)  But people who can’t run…or walk…or make it to the bathroom unassisted should not be judged by any other patient’s disease. It is THAT individual.  And we are all fighting it the best we can, whichever way works best for us.

4) If you don’t have visible or palpable swelling, then your disease is under control and not active.

Wrong,  wrong,  wrong!  Some people never have visible swelling, but still have active disease.  Studies have shown that people considered to be in clinical remission,  still have active inflammation as shown by MRI and ultrasound ,even though no swelling is visible and rheumatologists could not detect any inflammation by palpating their joints.   http://www.rheumatologynews.com/home/article/mri-ultrasound-find-ra-disease-activity-despite-clinical-remission/3dd09ce96b56da4c647b0f2e77c16332.html

Once again, the criteria of remission relies too heavily on blood work, which just isn’t a reliable indicator in many cases.  The study states that it would be of value to add ultrasound or MRI results to the clinical criteria of remission. Definition of remission lies heavily on quantitation of disease activity. As an example, the score of 2.6 on the DAS-28 CRP (four component disease activity score) constitutes remission, pure and simple. And universally agreed upon!

I rarely have swelling. And even when I do, it’s not spectacular.  When my rheumatologist was doubting my disease activity, she sent me off for ultrasound guided cortisone injections into several joints.  The ultrasounds showed active inflammation in my hips, shoulders, hands…every joint the tech examined was inflamed.   He was a friendly tech, and we had a rapport, so he looked at a few joints, while we waited for the radiologist to be free.  It was enlightening for him, and for me.

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These are my favorite myths.  They are serious, because they result in people being undertreated and thereby significantly reducing their chance at remission, or  low disease activity.

How to change this misconceptions?  Keep telling your rheumatologist.  Ask for ultrasound to look for inflammation.  Keep advocating for aggressive treatment with a target of remission.  And hopefully more studies will be done.

I’m sure there are more myths.  Tell me your favorites!

 

This article was reviewed and revised by Dr. Jonathan Krant, MD, FACP, CreakyJoints’ Medical Director, and practicing physician at the Division of Rheumatology, Adirondack Health Systems, Saranac Lake, New York.