I’ve been in the arthritis world for 9 years as of this month, and it’s easy for me to forget that there are some words we use that people outside of or new to the arthritis world have no idea what they mean. So if you’ve been recently diagnosed with a form of arthritis, you know someone who uses these terms and you’re not familiar with them, or you’re just curious, I hope that this glossary helps you!
Frequently Used Arthritis Terms
DMARDs – This abbreviation stands for Disease-Modifying Anti-Rheumatic Drugs. These are medications that can go after the rheumatological disease itself and not the symptoms that are a result of the disease (like inflammation). Some examples of these are methotrexate, sulfasalazine, Arava, Minocin, and Plaquenil. These medications can be taken alone but often work best by making biologics work better.
Biologics – These are the medications that, for many patients, actually make a significant difference in life with the disease. Medicine.net defines these as, “a product that is produced from living organisms or contain components of living organisms. Biologic drugs include a wide variety of products derived from human, animal, or microorganisms by using biotechnology” (x). Fun fact: vaccines are technically biologics! But in terms of arthritis, examples of these medications include Humira, Embrel, Stelara, etc. Aka most of the arthritis medications you see commercials for are biologics.
Biosimilars – Like biologics, these are medications made from living organisms. PhRMA.org says, “A biosimilar is exactly what its name implies — it is a biologic that is “similar” to another biologic medicine (known as a reference product) which is already licensed by the U.S. Food and Drug Administration (FDA)” (x). While it’s easy to say that biosimilars are like generics, this isn’t technically true. “Biosimilars are highly similar to the reference product in terms of safety, purity and potency, but may have minor differences in clinically inactive components” (x).
My rheumatoid arthritis treatment and how I got there
Remission – I personally think that it is VERY important to not equate arthritis remission with cancer remission, which is the way in which we most frequently hear this word. Cancer remission generally means that all signs of cancer are gone. Some people define arthritis remission similarly – all arthritis symptoms being gone without needing medication – but, from what I’ve heard from other patients and doctors, that example of arthritis remission is extremely rare. More frequently, arthritis remission is defined as “only [having] an occasional flare of joint tenderness or morning stiffness” while still taking medication (x).
Rheumatoid factor – The Mayo Clinic says, “Rheumatoid factors are proteins produced by your immune system that can attack healthy tissue in your body,” which is frequently present in people with autoimmune diseases (x). The test for rheumatoid factor is a blood test. And, fun fact, you can test negative for rheumatoid factor and still have rheumatoid arthritis, which is called being seronegative. I have always tested negative, but when it was suggested to some of my doctors that I don’t have RA they literally laughed. Everyday Health says, “While it’s still far more common to receive a seropositive diagnosis, a study published in August 2016 in the journal Rheumatology found that 38 percent of patients are diagnosed with seronegative RA” [emphasis mine] (x). Interestingly, 80% of seronegative cases become seropositive over time [x]. That’s wild to me!
Beginner’s guide: seronegative rheumatoid arthritis
RA – This is the abbreviate for rheumatoid arthritis! The Mayo Clinic says, “Rheumatoid arthritis is a chronic inflammatory disorder that can affect more than just your joints. In some people, the condition can damage a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels. An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body’s tissues. Unlike the wear-and-tear damage of osteoarthritis, rheumatoid arthritis affects the lining of your joints, causing a painful swelling that can eventually result in bone erosion and joint deformity. The inflammation associated with rheumatoid arthritis is what can damage other parts of the body as well.” (x).
OA – This is the abbreviation for osteoarthritis, which is what most people think of when they hear “arthritis.” The Mayo Clinic says, “It occurs when the protective cartilage that cushions the ends of your bones wears down over time. Although osteoarthritis can damage any joint, the disorder most commonly affects joints in your hands, knees, hips and spine. Osteoarthritis symptoms can usually be managed, although the damage to joints can’t be reversed” (x). I also want to clarify that while OA is frequently developed overtime, it is possible to develop it at any age through things like car accidents, sports injuries, etc. I know people as young as 18 who have osteoarthritis!
What is the difference between osteoarthritis and rheumatoid arthritis?
PsA – This is the abbreviation for psoriatic arthritis! The Mayo Clinic says, “Psoriatic arthritis is a form of arthritis that affects some people who have psoriasis — a condition that features red patches of skin topped with silvery scales. Most people develop psoriasis first and are later diagnosed with psoriatic arthritis, but the joint problems can sometimes begin before skin lesions appear. Joint pain, stiffness and swelling are the main symptoms of psoriatic arthritis. They can affect any part of your body, including your fingertips and spine, and can range from relatively mild to severe. In both psoriasis and psoriatic arthritis, disease flares may alternate with periods of remission” (x). Both psoriasis and psoriatic are autoimmune diseases. And my rheumatologist once told me that, just like you can have psoriasis without psoriatic arthritis, you can also have psoriatic arthritis without psoriasis. (Fun fact: I was first diagnosed with psoriatic arthritis and then it was changed to seronegative rheumatoid. I have only had 2 episodes of psoriasis in my life: one in 2007 and the other in 2009.)
Fibromyalgia – Fibromyalgia, or fibro, is a disease that falls under the arthritis umbrella! The Mayo Clinic says, “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals” (x). As you can tell from that “researchers believe,” very little is understood about fibro. And, by the way, you can have another form of arthritis and fibro! I have RA and fibro.
Flare – verywellhealth defines a flare as “an episode of increased disease activity or worsening symptoms. People with arthritis typically recognize a flare by the sudden intensity in joint pain accompanied by other characteristic symptoms such as fever, fatigue, malaise, stiffness, or joint swelling” (x). How long exactly is a flare? There is some debate among patients as to how many days it officially counts as a flare. I personally wait until day 4 or 5, and every day before that is just a bad day. I do that because for me personally, it’s very easy to have a singular bad day, and for every bad day I have, it takes 2 to recover. So at day 4 or 5, I’ve got an idea if I’m just recovering from overdoing it or from a bad weather day. I also do that because, to me as an RA patient, a flare means I increase my steroid dosage, so I need to be positive that it’s a flare. On the other hand, for someone who doesn’t take steroids for flares, their definition might be different.
MTX – This is a common abbreviation for methotrexate, which is a DMARD and actually a form of chemotherapy (x). For arthritis patients, methotrexate is a weekly medication that can be taken as a pill or as an injection. It is one of the first medications prescribed to arthritis patients. I don’t think a single arthritis patient who has taken MTX has liked it. As it is a form of chemotherapy, side effects include nausea, headache, etc.
TNF-inhibitor – This a type of medication. WebMD says, “TNF inhibitors are drugs that help stop inflammation. They’re used to treat diseases like rheumatoid arthritis (RA), juvenile arthritis, psoriatic arthritis, plaque psoriasis, ankylosing spondylitis, ulcerative colitis (UC), and Crohn’s disease. They’re also called TNF blockers, biologic therapies, or anti-TNF drugs” (x). Some examples of these are Humira, Enbrel, and Remicade. I do want to note, though, that not all RA medications are TNF-inhibitors, as not all patients respond to them. I’m one of them! I have never responded to any TNF-inhibitors.
Rheum/rheumy – This is an abbreviation for “rheumatologist,” which is the doctor that treats forms of arthritis (with the exception of OA).
Infusion – This is a form of receiving medications, like a pill or injection. You have an IV put in and medication goes straight into your bloodstream.
PT – While for many this is an abbreviation for “personal training,” in arthritis conversations, this is an abbreviation for physical therapy. You can have PT after an injury, to improve strength of muscles around a joint, to avoid surgery, after surgery, etc.
AS – This is an abbreviation for Ankylosing Spondylitis, which is “an inflammatory disease that, over time, can cause some of the vertebrae in your spine to fuse. This fusing makes the spine less flexible and can result in a hunched-forward posture. If ribs are affected, it can be difficult to breathe deeply” (x). You might be familiar with AS because Zach Kornfeld of the Try Guys has it, as does the excellent anonymous person on Twitter who goes by the username Coffee Spoonie.
KT Tape – This is a brand of therapeutic kinesiology tape, designed to improve pain and support certain areas of your body. Their website says, “KT Tape helps reduce pressure to the tissue and may reduce discomfort or pain. Correct taping also provides support to muscles by improving the muscle’s ability to contract, even when it is weak, and helps the muscle to not over-extend or over-contract” (x). I first encountered KT tape after my first knee surgery in 2015. After a few weeks of PT, my physical therapist taped my knee for me, and I haven’t looked back. With my knee, taping allows me to support it while not using a more restrictive brace. In fact, I haven’t worn a knee brace since! I also use it for other areas of my body, most frequently on my hand. I have arthritis in the knuckles that connect my fingers to my hand, and they don’t make braces for that. They have lots of instructions on how to use KT tape for different areas of your body – and if you don’t see what you’re looking for, you can email them about it! They’re very responsive.
PCP – This is an abbreviation for “primary care doctor,” aka a general practitioner, a doctor that treats a variety of issues, that does your annual physical, and who can write referrals to specialists.
Spoonie – A spoonie is someone with a chronic illness, and it also works for some mental illnesses, as well. It comes from Spoon Theory, created by Christine Miserandino. “Essentially, the Spoon Theory illustrates the challenges that someone living with a chronic illness faces every day. Each day, spoonies have a limited amount of energy and ability. This energy is represented by a handful of spoons. Activities of daily living take away ‘spoons.’ This makes it harder for chronic patients to keep up with daily tasks and responsibilities” (x). Sometimes, healthy people will say, “but everyone feels like this.” If you are an able-bodied person, getting out of bed, pouring a cup of coffee, doing every little thing that you do automatically, won’t affect your ability to do other things, like commute to work. (If you consider yourself healthy and all those little things do affect your ability to do other things, you should probably talk to your doctor.)
I personally have moved away from Spoon Theory in recent years because, unfortunately, the creator has become more than a little rude to people publicly using it. (Trying to get profits from people who sell spoon-theory products, etc.) Which is disappointing because she created this amazing analogy that has helped millions explain what they’re living with. I’m not going to say more on it because I don’t know the fully story in any of these cases, there could be more to it, and despite this disappointing behavior she did create this amazing resource for chronic illness patients, and I think she deserves at least a little bit of respect for that.
Immunosuppressant – I want to finish this glossary with this term because, if you have an autoimmune form of arthritis, you really need to know this term. “Immunosuppressant drugs are a class of drugs that suppress, or reduce, the strength of the body’s immune system. Some of these drugs are used to make the body less likely to reject a transplanted organ, such as a liver, heart, or kidney. These drugs are called antirejection drugs. Other immunosuppressant drugs are often used to treat autoimmune disorders such as lupus, psoriasis, and rheumatoid arthritis” (x). So if the problem with autoimmune diseases is that the immune system is mistakenly attacking the body, the way to make the patient feel better is to reduce the immune system. All TNF-inhibitors are immunosuppressants, as are corticosteroids like prednisone and methyprednisolone.
Like with all chronic illnesses, “if you have an autoimmune disorder, a regimen change can cause a flare-up of your condition” (x). This is part of the (many) frustrating things about living with an autoimmune disease. Because, when your immune system is suppressed, you’re more likely to get sick, and you will probably have to go off of your medications if you get sick, as it is much harder to heal when your immune system is suppressed. Personally, I’m currently on 3 immunosuppressants: methyprednisolone, Arava, and sulfasalazine. I will hopefully be going back on another one in September, as none of the ones I’m on are biologics, and as such my RA isn’t controlled. I don’t want to scare any of you, but those of us on immunosuppressants are much more susceptible to serious, life-threatening illnesses. I had an absolutely worst case scenario happen in December 2018, which is why I haven’t had a biologic dose since August 2018 (I was due for my next one in December but was super not allowed to take it).
5 items every immunosuppressed person needs
Like this post? Check out:
A Day in the Life of an Arthritis Patient, What You Need To Know about Arthritis, The Lifestyle Changes I Made for my Rheumatoid Arthritis, 8 Ways You Can Help Someone with Arthritis
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
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