A common frustration expressed by patients in my clinic with rheumatoid arthritis (and other types of inflammatory arthritis) is that their family and friends have very little grasp of what is occurring to them, often with significant misconceptions.
Family and friends want to help, but struggle to understand what they can do, feeling lost. They try to be sympathetic to your pain, but have zero idea how to help other than lifting heavy things and opening jars.
This guide is intended serve as a resource for patients to help their friends and family understand just enough of the medical aspects of arthritis to appreciate the symptoms they’re having, how it affects their daily lives and emotions, and the best ways to help.
Misconceptions about rheumatoid arthritis
- That someone with rheumatoid arthritis is doing well because they don’t “look sick.”
People with chronic conditions such as rheumatoid arthritis often learn to hide their symptoms and do their best to carry on throughout their day. Just because they look well, doesn’t always mean they are free of pain, fatigue, or other symptoms.
That symptoms of arthritis are limited to joint pain and shouldn’t make you feel tired, depressed, or helpless.
Because rheumatoid arthritis is a chronic, progressive condition caused by the immune system, and commonly causes more generalized symptoms (most commonly fatigue), and can occasionally affect internal organs (lungs are the most common organ effected).
That rheumatoid arthritis is just due to aging or other lifestyle factors, such as a “bad” diet or lack of exercise.
People of any age can be affected by rheumatoid and other forms of inflammatory arthritis, and as we’ll discuss below, we don’t completely understand what causes it. Also, while exercise and weight loss are important for everyone and help manage symptoms of rheumatoid arthritis, they do not treat the condition.
That people with rheumatoid arthritis are just treated with pain medications.
While pain medications are helpful to manage symptoms of rheumatoid arthritis, treating rheumatoid arthritis with pain medications alone will not prevent the immune system from causing damage to the joints and reduce inflammation in other parts of the body. Because of this, the main treatments typically used for rheumatoid immunosuppressive medications.
That you can just “fix” your arthritis by improving your diet or taking some supplement, or that it is caused by a “bad” diet.
Improving your diet (such as eating more whole, unprocessed foods and avoiding sugars) will usually make you feel better and is important for general health, but no specific diet or supplement will typically cure rheumatoid arthritis.
That people with negative labs cannot have rheumatoid arthritis.
Actually, about 20% of patients have negative rheumatoid factor (RF) and anti-CCP (a specific test for rheumatoid arthritis). The best way to diagnosis rheumatoid and other types of inflammatory arthritis is to see a rheumatologist who can do an exam to look for the type of joint swelling seen in these conditions, called synovitis.
What is the difference between rheumatoid arthritis and osteoarthritis?
We separate arthritis into two major types:
- Inflammatory arthritis, which is caused by the immune system attacking the joints, causing inflammation and damage. The most common type of inflammatory arthritis is rheumatoid arthritis, but this group also includes psoriatic arthritis, ankylosing spondylitis, juvenile idiopathic arthritis, and lupus. Treatment of this type of arthritis is focused on reducing inflammation, often with medications that suppress the immune system.
- Non-inflammatory, which is often referred to as osteoarthritis or degenerative arthritis. This type is typically caused by breakdown and loss of cartilage in joints. There is no role for using medications that suppress the immune system for osteoarthritis.
What causes rheumatoid and other types of inflammatory arthritis?
Unfortunately, we don’t have a great answer yet.
Normally, our immune systems do a good job protecting us from anything harmful in our environment, while recognizing that it shouldn’t attack parts of itself. Understanding how the immune system works and what happens when things go wrong has shown to be complex beyond our wildest imaginations. Researchers all over the world are working on this.
What we do know about the cause of rheumatoid arthritis:
- Something triggers the immune system into attacking the joints. We don’t know exactly what these triggers are, but do know some of the risk factors (below).
- This results in the immune system to be confused into attacking the joints.
- The immune system is very powerful, which results in inflammation and damage to joints.
- Because the immune system is present throughout the body, there are often systemic effects (outside of the joints).
Risk factors for developing rheumatoid arthritis
We also know a number of factors that seem to increase the risk of developing rheumatoid arthritis, such as female gender, family history, smoking, and obesity. There have been genetic factors identified that play a role in rheumatoid arthritis, especially in smokers. The role of an infection as a trigger has been hypothesized, especially periodontal (gum) disease or gut microbiome, but is still unproven.
How is rheumatoid arthritis treated?
DMARDs: The Mainstay of Controlling Inflammation in Rheumatoid Arthritis
The primary treatment of rheumatoid and other types of inflammatory arthritis are medications called ‘DMARDs’, which stand for ‘Disease Modifying Anti-Rheumatic Drugs’. These medications are the focus of treatment because they are able decrease inflammation in ways that are able to prevent joint damage from rheumatoid arthritis over the long term (which is why they are called ‘Disease Modifying’).
Methotrexate is the most common first-line DMARD prescribed, and is a strong anti-inflammatory and mild immunosuppressive. Other commonly used DMARDs of similar strength include leflunomide (Arava®) and azathioprine (Imuran®). Each of these medications have the potential for side effects, which most commonly include increased risk of infection due to immunosuppression, gastrointestinal upset, or generally feeling ill. Each of these medications also require frequent blood monitoring to watch for lowering of blood counts, liver inflammation, and kidney function.
Milder cases of inflammatory arthritis might be treated with medications that do not cause immunosuppression, which include hydroxychloroquine (Plaquenil®) or sulfasalazine.
The majority of patients with rheumatoid arthritis will actually require two or more DMARDs to control inflammation.
Unfortunately, there is no single ‘miracle drug’ or treatment that will cure rheumatoid arthritis — at best, these medications will keep people in remission, and need to be taken long term, which means frequent follow up with physicians and lab monitoring.
When inflammation is not controlled with first-line oral DMARDs, if patients are not able to tolerate them due to side effects, then newer biologic medications are often used. These are typically taken by subcutaneous injection or given intravenously (IV). These medications are work by targeting specific proteins in the immune system that cause inflammation. Currently, biologic medications are very expensive, costing thousands of dollars per month, but they are often highly effective (but not necessarily 100% effective as it would appear on commercials). Despite concerns about potential side effects, they are typically well tolerated. The most common side effects of this entire group of medications are increased risk of infection and injection site reactions (redness and swelling at the area the medication is injected under the skin).
Considering the Risks and Benefits of Treatments
In general, the risk of NOT treating rheumatoid arthritis outweighs the risk of treatment. Without treatment, there is an extremely high risk of damage to joints, leading to pain and disability.
People generally worry about damage to their liver and kidneys from medications used to treat rheumatoid arthritis, but this is generally avoided by frequent lab monitoring and close follow up with your physician.
When considering risk of infection from treatments used for rheumatoid arthritis, a few things to keep in mind:
- There is actually increased infectious risk due high disease activity related to rheumatoid arthritis (i.e., increased infectious risk from NOT treating rheumatoid arthritis).
- The majority of infectious risk from medications in the treatment of rheumatoid arthritis is attributable to prednisone, rather than DMARDs or biologics.
- Patients are typically screened for underlying risk of tuberculosis, hepatitis B and C prior to starting biologics, and also typically have their vaccinations updated (such as influenza and pneumococcal vaccines).
Additional Ways to Control Inflammation: NSAIDs and Prednisone
From a medication standpoint, the most commonly used additional treatments to control inflammation in rheumatoid arthritis are NSAIDs (such as ibuprofen or naproxen), or steroids such as prednisone. Either of these can be helpful, but each come with risk of potential side effects. Unfortunately, neither of these have been shown to prevent joint damage from rheumatoid arthritis, which is why they are not considered first line treatments. Since NSAIDs and prednisone work quickly, they are frequently used to control symptoms while waiting for slower-acting DMARDs to take effect.
- Are typically mild to moderate anti-inflammatories.
- Side effects include stomach upset and risk of bleeding ulcers, kidney problems, high blood pressure or heart problems.
- Because there are many reasons that people cannot take NSAIDs, they should ask their doctor before starting them.
- Is a moderate to powerful anti-inflammatories (depending on the dose).
- Increases risk of infection.
- Can affect your mood in many ways, such making you jittery, anxious, and can affect sleep.
- Can increase appetite and make people prone to gaining weight.
- Has a number of other side effects that might not be obvious to the observer, such as headaches, raising blood sugar or blood pressure, fluid retention, blurry vision and cataracts, and thinning of the skin.
Treating Flares of Arthritis
Frequently, a “burst,” or short course of prednisone is used to treat a flare of arthritis, which often exacerbates the pain and difficulty moving that the person is having with some of the side effects of prednisone noted above, such as feeling more anxious, more trouble sleeping, and increased appetite.
The Role of Supplements
Compared to DMARDs, generally supplements play a minor role in the management of rheumatoid arthritis. This is because no supplement has yet been shown to prevent joint damage.
Despite what you might read in other articles or see on TV shows, the latest natural supplement or remedy is not likely to be a cure-all for inflammatory arthritis. Unfortunately, these are generally just marketing hype or used to draw viewers to an article or show.
This being said, a few supplements, such as turmeric, may be helpful in managing symptoms or possibly reducing joint inflammation. Because supplements are not as well studied as medications obtained from pharmacies, we often don’t know as much about side effects or interactions with medications. For this reason, always discuss any supplements you are considering or currently taking with your doctor.
Besides medications, people with rheumatoid arthritis might need other types of treatment, such as help from physical therapists or occupational/hand therapists.
Exercise and stretching are important parts of treatment for arthritis, and really should be done as regularly as one would take medications. Depending on how well joint inflammation is controlled, the ability to exercise might be significantly limited due to pain, stiffness, or fatigue.
People may need devices to help with mobility, such as a cane or walker, or even to make modifications to their home. Some patients may need a handicap parking permit.
Other symptoms associated with inflammatory arthritis
Despite the name, symptoms and involvement from different types of inflammatory arthritis are not always limited to the joints.
Rheumatoid arthritis can be associated with additional problems such as rheumatoid nodules (firm lumps under the skin, most frequently noted on the hands, feet, and elbows), lung disease, and dry eyes and mouth. Eye inflammation is seen in many types of inflammatory arthritis (rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and others). Most types of inflammatory arthritis have been linked to increased risk of cardiovascular disease (such as heart attack and stroke), and increased risk of bone fracture due to osteoporosis.
Arthritis affecting daily life
Inflammatory arthritis affects patients in ways that are not obvious to the people around them, which include:
- Pain and stiffness causing loss of function
While one would assume that pain and stiffness are the most obvious symptoms of arthritis, they also seem to be the most difficult symptoms for others to notice.
Chronic pain is different from acute pain, since the person who has it is typically dealing with some degree of it all of the time. Because of this, the person doesn’t always “look” like they are in pain and may be doing their best to hide the fact they are dealing with pain and other symptoms. Often, the person may say that they are doing fine, which may mean that they are dealing with their usual amount of chronic pain.
The next most common symptom people with inflammatory arthritis deal with is fatigue, which is also one of the most difficult to explain to other people, since it is another invisible symptom.
For some people, fatigue will come and go with with activity of their joint inflammation, and many others will have fatigue on a daily basis.
A frequent way to explain chronic fatigue is Spoon Theory, which explains the “reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are a tangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest.”
Feelings of frustration, depression, and helplessness.
The uncertainty that results from a chronic condition can bring a person down mentally, not knowing if simple tasks such as getting out of bed or getting ready for the day will be difficult or painful. Often enough, the person with arthritis is frustrated by the fact that they have to be extra careful to avoid exposure to infections from other people, or that they can’t have a glass of wine or beer with you because it interacts with the methotrexate or another medication that they’re taking. Over time, these feelings can result in depression or other symptoms that require the help of a medical professional.
Side effects of medications.
On top of everything else, patients often have to deal with side effects of medications to control their condition. As above, the side effects will vary depending on the treatments being used, but nausea/stomach upset, headaches, or generally feeling ill. Increased risk of infection is always a concern. If they’re using prednisone, weight gain can be an issue, and can also affect their mood.
Listening: The Most Important Way to Help
The most important part of helping your family member or friend with arthritis is to start by actively listening to them.
Many people with inflammatory arthritis find it difficult to share and relate how they’re feeling or how they need help.
Things you can do to improve how you help by listening:
- Give the other person your complete attention. If they need your help, make sure you block off enough time to have a complete conversation and mute your phone so that you’re not distracted. Listen until they’re done talking and ask questions if you don’t understand or can’t relate.
- Ask how you can help before providing unsolicited advice or feedback.
- Things not to do: Don’t interrupt. Don’t judge. Don’t change the subject.
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