Rheumatoid Arthritis Treatment Not Working? Here’s What You Need to Know

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Rheumatoid arthritis (RA) is a chronic, inflammatory autoimmune disease that causes joint pain, stiffness, and swelling. While there is currently no cure, an expanding arsenal of medications can help reduce your symptoms. Additionally, diet and lifestyle changes may be recommended to supplement your treatment. 

When starting an RA treatment plan, your hope is for the disease to go into remission or to experience low disease activity. But what if your treatment doesn’t seem to be working? What if your symptoms get worse?  

A 2021 study, titled “Treatment Satisfaction, Patient Preferences, and the Impact of Suboptimal Disease Control in a Large International Rheumatoid Arthritis Cohort: SENSE Study,” found that only 13 percent out of about 1,600 study participants reported good treatment satisfaction. Satisfaction was defined as a general sense of improved arthritis symptoms and overall less joint pain.  

The medical community has a growing awareness of the problem of suboptimal treatment. Phillip Mease, MD, a rheumatologist at Seattle Rheumatology Associates, says. “We are seeing multiple patients on a weekly basis who, despite being on medication, are coming in with active disease — swollen joints, pain, stiffness, fatigue.” Some of these patients are on their fourth or fifth drug, he adds. “They had initially good responses, but then the drugs lost their benefit. It’s becoming more and more of an issue for us.”  

He estimates that 10 to 30 percent of patients are receiving inadequate treatment or have what is now known as “difficult-to-treat RA.” 

If your treatment results have not met your expectations, you can talk to your health care provider about your concerns. You may need a change of regimen. Here’s how you can identify when your treatment plan may be suboptimal and what you can do about it. 

What Is Suboptimal Treatment — And Why It Matters

You and your doctor might not use the phrase “suboptimal treatment,” but you should be talking about whether your rheumatoid arthritis treatment is helping you achieve optimal disease control. Suboptimal treatment means your current approach isn’t giving you the best results. This can happen if it’s not effective enough, has too many side effects, is hard to manage, or just doesn’t fit well with your life. Knowing when your treatment isn’t working can help you look for better options.  

Your perspective is very important to understanding if your rheumatoid arthritis treatment is working, but it helps to have clear guidelines. The SENSE study explained suboptimal treatment in four main areas: 

• Effectiveness: How well it controls your symptoms and helps you feel better. 
• Side Effects: How well you can tolerate them and whether they interfere with your life. 
• Convenience: How easy it is to follow the prescribed regimen. 
• Overall Satisfaction: How happy you are with the treatment overall.

Knowing these areas can help you and your doctor decide if your current rheumatoid arthritis plan needs to change to better help you.

Effectiveness  

The first place to begin assessing your treatment is with your symptoms. Good treatment should bring relief, low disease activity, or, the ultimate goal, remission. 

Eileen Davidson was diagnosed with rheumatoid arthritis in 2015 and knows what it is like to experience suboptimal treatment. She says the period of waiting to see if a medication is going to work is one of the most difficult aspects of RA. “It can take months to start working…It’s hard not to think about immediate relief.” 

Eileen defines effective treatment as “treatment that lets me go through my day without having to worry about fatigue or pain getting in my way.” And for the relief to be consistent.  

If you experience continued or progressive pain after treatment — especially if accompanied by swollen joints — it is a red flag and should be discussed with your doctor. It’s also important to note that if there is still pain, but no visible swelling in the joints, it could be a sign of fibromyalgia, a disease that shares common risk factors with RA. 

One symptom that can sometimes be overlooked by health care providers is fatigue. Fatigue can be an overwhelming mental and physical feeling that can affect the day-to-day life of people with RA. “A patient may feel like they are in quicksand or feel like they can’t even breathe. Fatigue is one the most disabling features of RA,” says Dr. Mease.  

Moreover, fatigue is not just a symptom of RA. It can also be pointing to other comorbidities, says Dr. Mease, such as sleep apnea or depression. 

Because there is no way of objectively measuring fatigue and it is not an observable symptom from a physician’s perspective, it may be overlooked during an exam. Communicating with your health care provider about any weariness, tiredness, or heaviness that you continue to feel despite treatment will help in judging whether you are receiving suboptimal treatment.  

In preparing to give feedback to your health care provider about the effectiveness of your treatment plan, some questions you can ask yourself are: 

• Has your joint pain and swelling been reduced? 
• Do you feel less stiff and more mobile in the mornings? 
• Are fewer joints affected?  
• Are you feeling more energetic and able to accomplish daily tasks? 
• Has the progression of joint damage slowed down or stopped? 

Side Effects

In general, the medications for RA are well tolerated, according to Dr. Mease, but some patients may experience side effects. The most common four categories of medications and their side effects are:  

• Nonsteroidal anti-inflammatory drugs (NSAIDs): These drugs, which include aspirin and ibuprofen, can cause gastrointestinal issues such as abdominal pain or even ulcers if overused. 
• Steroids: These are not usually the primary treatment for a person with RA but are used to manage symptoms of inflammation while slower-acting drugs are doing their work. Steroids can cause weight gain, mood changes, and a swollen face known as “moon face,” among other reactions. 
• Conventional synthetic disease modifying antirheumatic drugs (csDMARDs): Of this group, methotrexate is the one that can cause side effects in about a third of patients, including nausea, fatigue, or ennui. In very rare cases, csDMARDs can cause eye issues. 
• Biologic DMARDs: These drugs slightly increase the risk of serious infections. These infections are mostly bacterial but can also be fungal or viral. For example, TNF inhibitors increase the risk of infection by 1 percent, compared to csDMARDs, according to a 2021 study published in the journal RMD Open. 

Eileen has experienced side effects such as gastrointestinal issues, hair loss, acid reflux, and itching skin. “It’s very important to bring up to your rheumatologist if a medication is causing side effects and it’s disrupting your life,” she says. 

Convenience

Taking medication can feel like one more thing you have to remember. You may have to take multiple medications and remember which one to take when. Depending on your treatment plan, it may involve an office visit. Most DMARDs can be administered orally. But biologic DMARDs are given either subcutaneously (a shot) or intravenously.  

While it’s important to take your RA medication as prescribed, if it’s a regimen you feel like you won’t be able to follow, talk to your health care provider about finding one you can get on board with. 

Global Satisfaction

 A good treatment plan should make your life better. Understanding how suboptimal treatment can impact your quality of life is important in determining if your treatment plan is working. Here are some areas to consider when assessing your quality of life: 

• Physical well-being: Have you had to pull back on your activities? Can you manage day-to-day functions? How many days out of the week are “normal” days where your symptoms do not get in the way of what you want to accomplish? 
• Emotional health: When you are feeling miserable, it can impact your mood. Are you experiencing anxiety or depression when you can’t find relief for your symptoms? 
• Social life: A healthy social life can improve your overall outlook, but if your symptoms persist and prevent you from socializing, you may need a change of treatment. 
• Financial stability: Having a chronic illness can get expensive, depending on your insurance coverage. If your treatment is getting too expensive, you can discuss it with your health care provider. 
• Work ability: If you are employed, are you able to manage your tasks in the workplace? How often do you have to take off work because of your symptoms? Your productivity in the workplace will be affected by how well your treatment is going.

The Long-Term Impact of Suboptimal Treatment

When you are experiencing debilitating symptoms of pain and fatigue, what’s on your mind is how to get relief. But reducing your symptoms can have an even greater goal — it can prevent further disease. Left untreated, rheumatoid arthritis can cause joint damage, joint deformity, and loss of function. 

 Without remission, RA patients experience a shorter lifespan. Unchecked inflammation is associated with plaque in the arteries, leading to cardiovascular disease such as heart attack or stroke, says Dr. Mease. Widespread inflammation from rheumatoid arthritis can put you at a higher risk for other complications.   

 According to the Mayo Clinic, these can include: 

• Carpal tunnel syndrome 
• Dry eyes and mouth or Sjorgen’s syndrome 
• Heart problems 
• Infections 
• Lung disease 
• Lymphoma 
• Osteoporosis 

 “If I see a patient that still has swollen joints after three months of therapy, there may be an issue,” says Dr. Mease. “The goal is to reduce symptoms. Our idea is to get to complete remission in order to preserve joint function down the road.” 

Working with Your Doctor for Better Disease Control

If your symptoms are telling you that your treatment is not working, it’s time to have a conversation with your doctor. Here are some ways to improve that communication: 

• Keep a diary. With a notebook or an app that tracks your symptoms, note activities you can and can no longer do, and record what treatments help or don’t help.  
• Stay current with regular health checks. Your doctor may ask you to have blood tests at intervals to monitor inflammation or prescribe imaging tests to check the progress of your joint health.                 
• Make regular appointments. Discuss your treatment goals/progress frequently. 
• Keep open communication. Ask how long it should take for your medication to work and what side effects to expect. Share any concerns you have about the medication. 
• Advocate for yourself. Don’t hesitate to speak up about your needs and concerns. If you feel your treatment isn’t effective, let your doctor know. 

 No one understands your symptoms better than you. “If you have gotten through a doctor visit and feel as though the physician has not addressed what is important to you, you need to bring it up,” says Dr. Mease. “Don’t feel like you are an irritation.” After all, it’s your health on the line. 

Check Out Remission Possible

Our Remission Possible podcast is dedicated to guiding and supporting you on your mission to take back your life and control symptoms. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. Listen now.