Welcome back to part three of my rheumatoid arthritis guide! In this post, we’re talking about remission, lots of different rheumatoid arthritis medications, seronegative rheumatoid arthritis, spoon theory, x-rays, and so much more. As always, please remember that all patients are different, and my experience with and opinion of rheumatoid arthritis medications are my own. I’ve tried to accumulate as many explanations for rheumatoid arthritis patients as possible in these posts – including anecdotal experiences as well as definitions – but I’ve definitely missed things.
This post became so long that I had to split it up. Check out Part 1 and Part 2. If you want an ad-free version of all 3 parts, get that here.
I am not a medical professional of any kind. This post contains affiliate links; thank you for supporting Kate the (Almost) Great®!
I would be remiss to not mention the inspiration for these posts: Sheryl’s post Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient on her blog A Chronic Voice. I know that she’s not the first person to share something like that for their illness, but it’s what prompted this post. Be sure to check out her blog for more chronic illness resources!
In this post, you’ll see everything from blood tests run to related illnesses, from symptom definitions to medication terms, from diets commonly followed by patients to medications taken by patients, and beyond.
Rheumatoid Arthritis Guide R-Z
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Remicade
This is one of the infusion TNF-inhibitor medications. After a few starter doses over several weeks, you receive Remicade generally every 8 weeks (x).
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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).
The Complications of Arthritis
Rheumatologist
Rheumatologists are doctors who “who received further training in the diagnosis (detection), and treatment of diseases that affect the muscles, bones, joints, ligaments, and tendons” (x). More specifically, they treat “systemic autoimmune diseases” and did extra years of training beyond medical school in the specialty of rheumatology (x).
If you have rheumatoid arthritis, you should be seeing a rheumatologist.
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Rheumatoid Factor
This is probably the best-known blood test for rheumatoid arthritis. Rheumatoid factor is a “protein produced by the immune system that can attack healthy joints, glands, or cells by mistake” (x). It can indicate other conditions, namely lupus or some cancers, but if you have RA symptoms and a positive rheumatoid factor, you almost definitely have rheumatoid arthritis (x).
CRP and ESR show general inflammation, which means that anyone with an inflammatory disease can have higher-than-normal results. But the rheumatoid factor is a lot more specific.
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Rheumatoid Nodule
These are some of the weirder RA symptoms out there, and every time I get one, it freaks me out.
These are “lumps that people with rheumatoid arthritis develop under their skin or in other areas” (x). While they’re not harmful on their own, they can be in painful locations or cause pain by pressing on tendons.
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Rituximab
Rituximab (or Rituxan) is a B-cell inhibitor and is, in fact, my primary treatment. It is a form of chemotherapy and therefore is often given in an oncology treatment center. Some patients receive 2 infusions 2 weeks apart every 6 months; I receive 1 every 3 months.
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Scar Tissue
Scars are a natural part of the body’s healing process, but the whole problem with rheumatoid arthritis is that the body’s natural healing process doesn’t work. My body in particular loves to create scar tissue.
Sed Rate
This is another name for the ESR blood test. As I said, the S in ESR stands for sedimentation rate, so ESR is sometimes called Sed Rate.
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Seronegative
RA patients who test negative for rheumatoid factor are called seronegative. Up to 20% of RA patients are seronegative! (x)
Seronegative patients still have all the same symptoms that seropositive patients do: chronic inflammation, morning stiffness, fatigue, joint pain, etc. What is especially interesting is that a 2016 study found that seronegative RA patients might in fact have higher inflammation levels than seropositive (x).
Additionally, some researchers contend that a potential difference between seronegative and seropositive patients might be the joints affected (x). This refers to which joints are affected, so seropositive patients might have different affected joints than seronegative ones. Regardless, seronegative patients still need as aggressive treatments as seropositive ones.
All of this is to say that, no, you do not have to test positive for rheumatoid factor to have rheumatoid arthritis.
Seronegative Rheumatoid Arthritis Diagnosis: What I’ve Learned
Seropositive
As I just said, RA patients who test positive for rheumatoid factor are called seropositve (x). The reason why this distinction is important is because, as I mentioned in the rheumatoid factor section, not everyone who tests positive for rheumatoid factor is a rheumatoid arthritis patient. Yes, a lot of them are, but it’s not just for RA patients.
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Sjögren’s Syndrome
The Mayo Clinic says that Sjögren’s is “a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth” (x). They go on to say that it “often accompanies other immune system disorders, such as rheumatoid arthritis and lupus” (x).
So what’s happening when you have Sjögren’s? The Arthritis Foundation says, “In Sjögren’s syndrome, the infection-fighting cells of the immune system (called lymphocytes) attack the normal cells of exocrine glands – the glands that produce moisture in the eyes, mouth and other tissues” (x).
Mayo adds that “In Sjögren’s syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva” (x).
There are 2 different categories of Sjögren’s syndrome: primary and secondary. The NIH says that primary Sjögren’s is when “you do not have another rheumatic disease” in addition to Sjögren’s, and secondary is when you do have another one (x). I personally have secondary Sjögren’s, as I also have rheumatoid arthritis, and my RA is my main condition in general and when it comes to Sjögren’s.
What Sjögren’s Syndrome Is: A Beginner’s Guide
Spoonie & Spoon Theory
Spoon theory was created by Christine Miserandino, a lupus patient, as she tried to explain what it’s like living with an autoimmune disease. A friend “asked what it felt like, not physically, but what it felt like to be me, to be sick” (x). A spoonie is someone who falls under the spoon theory umbrella.
Here’s how she explained living with lupus:
I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
[…]
[F]or my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ”No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. […] I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on.“
Read the whole story about how Miserandino created spoon theory on her website.
It’s important to understand that spoon theory is not for healthy people because healthy people are not limited in the way that chronically ill people are. This is not to say that healthy or able-bodied people don’t experience exhaustion or burn-out; it’s just different.
No matter how good a day I’m having, I’m always limited by spoons. Some days I wake up and have fewer spoons. Some days I wake up and I have a normal number of spoons but they’re all a little crooked. Some days I wake up and I have almost no spoons. Some days I wake up and my spoons are chipped or twisted. Some days I wake up and I have silver spoons, and some days they’re plastic spoons.
While spoon theory was created by someone with a physical chronic illness, I think people with mental illnesses should get to use spoon theory. Maybe not everyone or every mental illness – I have generalized anxiety disorder and that doesn’t feel like spoon theory applies, but with depression I think it absolutely does – but I think there are plenty of people with mental illness and without physical illness for whom spoon theory applies.
At the end of the day, I’m anti-gate keeping, so I’m not going to say someone can’t use spoon theory unless they don’t have any physical illness symptoms and they don’t have a mental illness. I know this is shocking, but yes, those people exist!
Long story short: if you don’t have a physical illness or a mental illness, spoon theory isn’t for you.
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Steroids
When we talk about steroids in the arthritis sense, we’re talking about corticosteroids and not the kind that athletes might take to illegally boost their performance. These steroids “reduce inflammation because they are chemically similar to cortisol, one of your body’s natural anti-inflammatories” (x).
Generally, steroids are prescribed for a flare, although some people like me are on low doses constantly. These are pills, although often when people get infusions, they’ll get IV steroids to help the body deal with the medication.
As mentioned before, if you are on corticosteroids like prednisone, then your immune system is suppressed. Lots of people can be on corticosteroids for short increments, such as an asthma flare or even COVID, so be aware that your immune system is suppressed while you take them.
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Synovium
This is a natural part of the joint that we don’t really think about! The Cleveland Clinic says, “The synovial membrane is a thin barrier that lines the inside of some of your joints” (x). You can sort of think of your synovium like oil; it keeps things moving smoothly.
The reason this is important is that the synovium is where exactly rheumatoid arthritis attacks (x). RA involves inflammation in the lining of the joint? That’s the synovium!
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T
TENS Unit
This is a unit that uses electric current to stimulate the nerves and help pain. I was prescribed one in high school, and it did help. That was before my arthritis was pretty much everywhere, and since then I’ve used it and it has helped some joints but hasn’t helped others.
Getting a portable unit does require going through a doctor in order for your insurance to pay for it, but they are way more accessible now than they were in 2006. In fact, Target now sells them. This easy@Home TENS Electronic Pulse Stimulator Muscle Massager Unit is just $32.
Why Is Rheumatoid Arthritis Hard to Diagnose?
TMJ
As the Mayo Clinic says, “The temporomandibular (tem-puh-roe-man-DIB-u-lur) joint (TMJ) acts like a sliding hinge, connecting your jawbone to your skull” (x). So while many people think “TMJ” is the name of a condition, it actually stands for the name of the joint. Mayo explains, “You have one joint on each side of your jaw. TMJ disorders — a type of temporomandibular disorder or TMD — can cause pain in your jaw joint and in the muscles that control jaw movement” (x).
What most people think when you say “I have TMJ” is temporomandibular joint and muscle disorders. The NIH says, “Temporomandibular joint and muscle disorders […] are a group of conditions that cause pain and dysfunction in the jaw joint and muscles that control jaw movement” (x).
Arthritis is one of many conditions that fall into the TMJ category. So not everyone with a TMJ disorder will have TMJ arthritis, but everyone with TMJ arthritis has a form of TMJ.
Arthritic damage to my TMJs is actually how I was diagnosed. You can read more about that, as well as about TMJ syndromes in general, here.
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TNF-Inhibitors
TNF-inhibitors are drugs that go after the tumor necrosis factor (x). This helps reduce or stop inflammation in people for whom the TNF is the problem, namely that they have too many TNF cells (x). The immune system releases “TNF to alert other immune system cells as part of an inflammatory response” (x).
These drugs are usually taken via a shot that you give yourself or an infusion that you get at a doctor’s office. You are only ever on one TNF-inhibitor at a time.
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Ultrasound
Yup, ultrasounds are for more than just looking at fetuses!
As a 2020 paper says, ultrasounds can be used “from the prediction of progression to RA in at-risk individuals, to confirmation of the early diagnosis of RA, as well as the consideration of differential diagnoses, and the use in disease monitoring and defining remission” (x).
But ultrasounds can also be used for treating things. WebMD says, “Thermal ultrasound therapy is used to treat stretch pain, soft tissue pain, and other musculoskeletal issues” while mechanical ultrasound therapy uses “the waves created by the ultrasound create pressure differences in tissue fluids, which lead to the forming of bubbles” (x).
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X
X-Ray
X-ray is an extremely well-known type of imaging. Specifically, it is “a quick, painless test that captures images of the structures inside the body — particularly the bones” (x).
According to healthline, some of the RA symptoms that show up on x-rays include changes in the shapes of your joints, lesions or damage to your bones, cartilage loss, misalignment, soft tissue swelling and calcification, bone density loss, cysts, and more (x).
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Xeljanz
This is one of the common JAK inhibitors available for rheumatoid arthritis patients. It is taken as a pill (x).
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As mentioned, this is a 3-part series. Check out Part 1 and Part 2. Thanks for coming along with me on this journey!
Like this post? Share it! Then check out:
Helping Someone with RA, My Rheumatoid Arthritis Treatment + How I Got There, Problems from My Inflammatory Arthritis + How To Deal with Them, Chronic Illness and Mental Health
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.
[…] post became so long that I had to split it up. Check out Part 1 and Part 3 or get an ad-free version of all 3 parts […]