Authors: Rita Baron-Faust,Jill Buyon
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (6 page)
The first symptoms of RA may be swelling and pain in the joints along with morning stiffness. In 90 percent of people, the first areas affected by rheumatoid arthritis are the hands and feet. The disease often affects the wrists and
finger joints closest to the palm, as well as joints in the jaw, neck, shoulders, elbows, hips, knees, ankles, and toes. Any joint in the body can be a target except the low back, which is rarely involved.
Inflammation can cause body-wide symptoms such as low-grade fever, flu-like body aches, and a general feeling of not being well (doctors call it
malaise
). You may also lose your appetite, lose weight, and feel like you have no energy. A majority of RA patients experience fatigue.
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However, fatigue in RA is different from just feeling tired; fatigue often means you can’t function at all. It’s unclear whether fatigue is related to inflammation.
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It may also be a symptom of anemia, which often accompanies RA. Inflammation can affect the tear-producing glands in the eyes and saliva-producing glands in the mouth, so you may experience dry eyes and dry mouth. You can have muscle pain and stiffness after sitting or lying in one position for a long time. Depression is also common.
At first, these symptoms may not add up to much. There are other medical conditions, both rheumatic and nonrheumatic, that can look a lot like rheumatoid arthritis, especially in the early stages, such as lupus and hypothyroidism. In fact, any infection that produces joint aches can look like rheumatoid arthritis. Often a woman will complain of joint pain to her doctor, and all that can be seen is puffiness of the hands, with none of the obvious redness or warmth that typically characterizes RA.
“The reason the patient comes in is usually that they are feeling pain. Maybe it’s not rheumatologic, but it has to be taken seriously and investigated,” stresses Yusuf Yazici, MD, an assistant professor of medicine at the New York University School of Medicine and the NYU Hospital for Joint Diseases. Some studies find that almost one-quarter of RA patients may already have developed bone erosions by the time they see a rheumatologist. “We know now that it’s important to diagnose and treat RA as early as possible to prevent joint damage and disability,” he says.
About one-quarter of women with RA develop raised, firm lumps called
rheumatoid nodules.
“Rheumatoid nodules are actually abnormal accumulations of cells, much like the synovial cells that we see accumulating within the joint, but they commonly occur just under the skin. Nodules often appear in an area where there’s repeated pressure, such as on the elbows where you lean them on a table, or the finger joints. Because rheumatoid arthritis is a systemic disease, nodules can show up in other places, such as the eye, the heart,
and the lungs. They can be very destructive, very damaging, interrupting whatever is in their path of growth. And they can be disfiguring and disconcerting.”
Up to half of RA patients can develop inflammation in the linings of the chest and lungs (
pleurisy
), causing pain on taking a deep breath and breathlessness; rheumatoid nodules can also appear in the lung tissue itself, not just the lining. Inflammation can also affect the sac around the heart (
pericarditis
), producing fever, chest pain, a dry cough, and difficulty breathing. Blood vessels can also be inflamed (
vasculitis
); a common sign is tiny broken blood vessels in the cuticle area.
You may first notice the symptoms of RA during the winter, and symptoms often feel worse during the cold months and improve in warm weather.
While RA develops gradually in about 50 percent of women, with symptoms coming and going for months, a more continuous pattern eventually emerges. “It sort of locks in, and then there is a clear day-in, day-out pattern in which people are quite stiff for a long time when they wake up in the morning. The joints are swollen and red, and there’s pain when the joint is moved. If this persists for a number of days or weeks, it should be a signal that a woman needs to see a doctor,” emphasizes John H. Klippel, MD, former president and medical director of the Arthritis Foundation. “This disease needs to be diagnosed very quickly and treatment needs to be started quickly. So that increases the importance of having women recognize the signs and symptoms.”
Kathleen’s story continues:
My disease took an incredible toll on my personal life. Making love was almost impossible. Just being touched hurt so bad. It’s not like a muscle ache or something where you can lie down and relieve the pain on that part of your body . . . it feels like you’ve broken a wrist and never set it. And you’re living with this and that’s what it feels like. . . . And you’re depressed, you feel sick all the time, and you feel tired all the time. There’s a huge fatigue factor in this disease. My daughter was about three and a half, four years old, and it was hard for me to even play with her. She’d stand on the stairs and say, “Mommy, catch me,” and I’d have to scream, “Don’t jump—I can’t catch you!” One of the worst days, I remember, I had gotten out of the shower and I was sitting on the edge of the tub and I had this big plastic bottle of body lotion and I couldn’t squeeze it to get any lotion out. And it
was full. And I started to sob, I just started to cry . . . and Rachel walks in and says, “Mommy, what’s wrong?” and I said, “I can’t do this.” And she said, “Oh, I can.” And she took the bottle from me and squirted it all over my body like ketchup—which was wonderful and funny, but at the same time it was so terribly sad because I couldn’t do what a four-year-old could do.My husband was wonderfully supportive . . . he and I had a code when we would go out for dinner or something, and if I had to get up to go to the bathroom or we would have to leave, he would come around to my chair and he would pull my chair back, and in the guise of this great courtesy, would get his hands under my arms so that he could just lift me out of the chair because I couldn’t get myself up.
Rheumatoid arthritis can be difficult to diagnose in its early stages. For some, the full range of symptoms develops over a long period of time; in the early stages of RA only a few symptoms may be present. Symptoms can also vary widely from woman to woman; some have more severe symptoms, while others have only slight problems. Symptoms of RA can also mimic other types of arthritis and autoimmune diseases, such as lupus. So those conditions must first be ruled out.
The first thing your doctor will do is take a medical history, asking you to describe your symptoms, when they began, and how they may have changed or progressed over time. You’ll be asked about the amount of joint pain you experience, how long you feel stiff in the morning, and how long episodes of fatigue last. The doctor will examine your joints for the classic signs of RA, including redness, swelling, and warmth; assess how flexible your joints are; and test your reflexes and muscle strength.
No single test can definitively diagnose RA, but together the tests can help confirm a diagnosis.
Diagnostic criteria set by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) can help distinguish rheumatoid arthritis from other causes of chronic joint problems.
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They include:
- Morning stiffness lasting at least an hour
- Arthritis in three or more joint areas, with soft-tissue swelling
- Arthritis of the joints of the hand (including the wrist or knuckles)
- Symmetric involvement of joints
- Rheumatoid nodules
- Erosions, bone loss, or other changes seen on an x-ray
- A positive blood test for rheumatoid factor (RF) or antibodies to
cyclic citrullinated peptides (anti-CCP)
.
You need to meet four of these seven criteria, and the first four must have been present for at least six weeks. Together with the results of a series of blood tests, they can add up to a diagnosis of rheumatoid arthritis.
Rheumatoid factor (RF)
is an antibody found in the blood of most patients with rheumatoid arthritis. Not every woman with RA tests positive for rheumatoid factor—especially early in the disease, when it’s detected in only 50 percent of patients. Eventually the test is positive in around 80 percent of people with RA. If you test negative, you’re said to be seronegative. But RF can also be present in women with other conditions such as lupus and
Sj
ö
gren’s syndrome
. So a positive test for RF can support a diagnosis of RA, but by itself it isn’t enough to diagnose the disease.
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Antibodies to cyclic citrullinated peptides (anti-CCPs)
are found in 60 to 70 percent of people with RA. Peptides are microscopic pieces of proteins. Antibodies to CCPs can be found in people who do not have RF and may be present even before the earliest signs of RA appear. If the test is positive, there’s a better than 95 percent chance that you have RA, according to the ACR. Anti-CCP levels can also be a predictor of future joint damage and show how well you’re responding to treatment.
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Erythrocyte sedimentation rate (ESR or SED rate)
gauges how fast red blood cells settle at the bottom of a tube of whole blood within a one-hour period. Any inflammation in the body (such as the flu or a severe infection) increases plasma proteins, such as the clotting factor fibrinogen, which makes
red blood cells clump together. These clumps of cells settle faster than single cells. In healthy people, red blood cells fall at a rate of about 20 millimeters per hour; in women with inflammation, the SED rate speeds up to about 100 millimeters an hour. An elevated SED rate is a nonspecific sign of inflammation and is seen in rheumatoid arthritis and other autoimmune inflammatory conditions.
C-reactive protein (CRP)
is another marker of inflammation and may be more sensitive than ESR. Your ESR can be normal while CRP can be elevated. CRP is normally around 10 mg/L, but in RA it can range from 40 to 200 mg/L.
Antinuclear antibodies (ANAs)
, autoantibodies that react against the nuclear material of cells, are found in the blood of more than 95 percent of women with systemic lupus erythematosus (SLE) and a majority of women with Sjögren’s syndrome, but less than half of women with RA. So a positive ANA may be helpful in distinguishing RA from lupus but, again, keep in mind that the ANA is not specific for lupus.
A
complete blood cell count (CBC)
is a standard part of any medical workup. Using laser technology, a machine counts each type of blood cell one by one: red blood cells (RBCs), white blood cells (WBCs), and
platelets
(cells needed for blood clotting) are differentiated by their size. A CBC can detect anemia (low levels of red blood cells), which often occurs in RA. Your hemoglobin level reflects the oxygen-carrying capacity of red cells; the hematocrit (which is three times the level of the hemoglobin) tells how many red blood cells you have in a given volume of blood. Hemoglobin levels can vary from woman to woman, but the normal range is between 12 and 16 grams of hemoglobin per deciliter of blood (g/dL); a hematocrit ranges from 35 to 47. Either (or both) can diagnose anemia. (Reference ranges vary from lab to lab.) Keep in mind that menstruating females often have lower hemoglobin levels than postmenopausal women do.
A CBC also measures the number of key white blood cells, like neutrophils, that destroy invading bacteria and viruses by releasing granules of toxic chemicals. In RA, these cells are overactive and multiply. For example, in some RA patients, neutrophils may be depleted (neutropenia), a disorder called Felty’s syndrome that poses an increased risk of infection.
Other blood tests are done as part of an initial workup to assess organ dysfunction due to coexisting diseases. These tests include liver and kidney
enzymes that indicate organ damage. This is important because some medications used to treat RA can be toxic to the liver or kidneys and can’t be used if these organs are impaired.
X-rays
(doctors call them
radiographs
or
plain films
) are used to determine the degree of joint destruction. An x-ray can show damage to the bones, loss of cartilage, and distortion of the joints, as can magnetic resonance imaging (MRI) and ultrasound. Baseline radiographs are done to provide a reference to assess any future progression of the disease and to help judge the effectiveness of disease-modifying agents. In the early stages of the disease, bone damage will not be evident on an x-ray. In fact, the joints may appear normal except for signs of soft-tissue swelling and some thinning of the bone around the joints. But there can be a rapid progression to the signs considered the hallmark of RA seen on x-rays, MRIs, or ultrasound (sonograms)—the start of bone erosion in areas close to the joint. Sonograms can be done right in your doctor’s examining room.
Kathleen’s story continues:
I went to see a doctor in Boston who was horrified by the mixture of drugs I was taking, and the first thing he said was, “We have to get you off these drugs.” And he told me to get into a pool, as much as I could as long as I could every day, and just try to swim. So I joined a club in midtown and I started to try to swim. My hands were OK enough that I could hold onto a kickboard, and my hips weren’t affected very much, so I was able to kick straight-legged, and I went back and forth, back and forth, as long as I could stand it. The pain was unbelievable. One day I was able to let go of the kickboard and do a sort of half breaststroke, and that was a great triumph. This was about four years in. One day I got my whole arm to do a stroke, and I stood there in this pool sobbing and yelling, and the poor lifeguard dove in and he grabs me, and I said, “No, no, you don’t understand—I just moved my arm!” From then on I said to myself, “OK! I’m getting better.”
When the new drugs came out I was in rehearsal for a one-woman show called Tallulah! and my knees blew up. . . . They were extremely painful, so my doctor gave me a new biological drug. I remember it was a Saturday and I injected the medication, and put my legs up and watched over the next four or five hours as my knee swelling went down, and I thought, “Oh
God, I’ve got something really good here.” . . . I’m in remission and I know I’m incredibly lucky.