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When rheumatologists treat rheumatoid arthritis, their goal is typically to get their patients into remission—a stage wherein symptoms are extremely minimal or nonexistent and don’t interfere with their everyday life. But even when a patient is in remission, there’s always the chance that symptoms will reappear during a rheumatoid arthritis relapse.
Today, more than 1.3 million Americans are living with rheumatoid arthritis, according to the American College of Rheumatology. Research suggests that somewhere between 10% and 20% of them are able to reach remission, and a much larger group—as much as 50% or maybe even 70%—achieve a state of low disease activity, meaning they still have symptoms but they’re much less severe than when the disease was more active, explains Gary Firestein, M.D., dean and associate vice chancellor of translational medicine at UC San Diego School of Medicine.
It’s not uncommon for someone with rheumatoid arthritis to alternate between stages of remission and relapse. In fact, up to one third of people in remission experience alternating periods of relapse of disease activity, according to the Arthritis Foundation. When relapses happen, they’re usually due to changes in medication, such as when you stop taking medication or take less than usual, or if the medication stops working for you.
Keep reading to learn more about about rheumatoid arthritis relapses and why they happen:
What is a rheumatoid arthritis relapse?
There isn’t a strict definition for a rheumatoid arthritis relapse, but it’s essentially the return of symptoms that were once under control and in remission. When a patient is in remission for rheumatoid arthritis, there’s no evidence of active joint inflammation in clinical exams or as perceived by the patient.
“As soon as someone is once again showing those signs, they would be considered to be having a relapse,” Dr. Firestein says.
If you’ve been in remission for a while but are now experiencing joint pain, swelling, and stiffness that’s seriously impacting your quality of life, there’s a good chance you’re experiencing a relapse.
“Usually that prompts a visit to the rheumatologist to try to figure out whether or not this is just a flare of your disease or whether it's actually a relapse,” says Elizabeth Schulman, M.D., rheumatologist at Hospital for Special Surgery.
A rheumatoid arthritis relapse won’t look the same for everyone, mainly because rheumatoid arthritis can affect every patient differently. Some may have more mild or severe symptoms than others, and the joints involved won’t always be the same from person to person.
Here’s how to tell if you’re experiencing a relapse.
The first thing to look out for is the return of symptoms you previously experienced with rheumatoid arthritis before you were in remission. When you’re dealing with a rheumatoid arthritis relapse, it’s common to experience joint pain or tenderness, joint swelling, and prolonged morning joint stiffness that lasts at least 30 minutes. You might have trouble fastening a belt or button, or holding your coffee mug.
You should also be on the lookout for more subtle signs of a relapse, like fatigue and malaise. These are both signs of inflammation that don’t present right in the joints, Dr. Schulman says.
What causes a rheumatoid arthritis relapse?
Most rheumatoid arthritis relapses are related to medication—either when medications are changed or simply stop working. Here are some of the most common reasons you could suffer from a relapse after being in remission from rheumatoid arthritis:
Rheumatologists aim to keep their patients on the lowest dose of medication as possible, so when a patient is in remission, the rheumatologist may try to decrease the amount of medication they’re taking. Sometimes this sort of medication adjustment is well received, but not always.
“In many cases, if you go too far, people begin to notice that their symptoms have returned,” Dr. Firestein says. “And that reminds people that rheumatoid arthritis isn't cured, but is instead treated.”
A small subset of rheumatoid arthritis patients can come off all of their medication without relapsing. Rheumatologists refer to this as “drug-free remission,” but we don’t have a good understanding of which patients will be able to stay off medication without relapsing.
“We still don't know who is going to be able to be in a drug-free remission and who won't get a relapse,” Dr. Schulman says.
When a patient is in a prolonged state of remission and isn’t showing any markers or signs of inflammation, the rheumatologist may talk to them about coming off medication. If successful, the patient will stay in remission once they’re off the medication. But in many cases, ceasing medication triggers a relapse.
“Most people will relapse if you're off all medications,” Dr. Schulman says.
Like all medication, rheumatoid arthritis medications carry a risk of side effects. If you’re suffering from medication side effects that are hard to manage, your rheumatologist may respond by changing or reducing your medication. When taking the rheumatoid arthritis medication methotrexate, for example, nearly a third of patients experience sores in the mouth as a side effect.
“If someone is in remission and has persistent sores in their mouth, we may want to adjust their medicine down in order to decrease that side effect,” Dr. Firestein says.
But in doing so, some patients may have a relapse.
Sometimes a medication may stop being effective and lead you to suffer from a relapse. Dr. Firestein says this can happen among some people who are treated with a type of drug called biologics, which are genetically engineered to target specific parts of your immune system that drive inflammation. A small percentage of people, around 5% to 10%, who take various biologics will develop antibodies that neutralize the medication and render it ineffective, and symptoms may start to reappear, Dr. Firestein explains.
“So the medications that have been working and controlling your disease for months, or even years, can start to be less effective because your body has almost built up a resistance to it,” Dr. Schulman says.
These types of relapses are one of the big reasons rheumatologists often say it’s important to see patients every three or four months, so they can monitor for relapses and make sure medications are still working. Keep in mind that your treatment options may change over time based on new research and newly available therapies. Make sure you have ongoing conversations with your doctor about which treatment options may be best for you.
There isn’t much research to show that lifestyle factors like sleep, exercise, diet, and stress can trigger a relapse, but rheumatologists and researchers know that these play a role in managing the illness and working toward remission. A rheumatoid arthritis flare—which is when symptoms come back for a short period of time after the illness was under control—can sometimes be triggered by an infection, stress, overexertion, or diet.
Researchers are also looking into the role of the gut microbiome in rheumatoid arthritis and how it could potentially be associated with disease flares, but that research is still in the early stages.
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