JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Wednesday, December 8, 2010

An RA Dictionary

Here is a list of common RA terms, in alphabetical order, used that some of you may, or may not know.  I also included the abbreviations, since I use them a lot!   I sorted them into three categories, illness, medications and other terms.   Hope this helps!
(I will add more as people ask me about certain things also)

Illnesses:

Autoimmune Disease: any of a large group of diseases characterized by abnormal functioning of the immune system that causes your immune system to produce antibodies against your own tissues
  

Fibromyalgia (FMS): is a common condition characterized by long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems, headaches, numbness in hands and feet, depression, and anxiety.
  
IgA deficiency: is the most common immune deficiency disorder. Persons with this disorder have low or absent blood levels of a special protein called immunoglobulin A.  Some people with this condition have chronic diarrhea caused by intestinal infections. Some have frequent ear, sinus, and lung infections. 
Patients with IgA deficiency may develop antibodies to IgA, and can have severe, even life-threatening reactions to transfusions of blood and blood products. If transfusions are necessary, washed cells may be cautiously given.

Interstitial cystitis: or Bladder pain syndrome/interstitial cystitis (commonly abbreviated to "BPS/IC") is a urinary bladder disease of unknown cause characterised by pain associated with urination (dysuria), urinary frequency (as often as every 10 minutes), urgency, and pressure in the bladder ...

Juvenile Rheumatoid Arthritis (JRA): is a term used to describe a common type of arthritis in children. It is a long-term (chronic) disease resulting in joint pain and swelling.


Rheumatoid Arthritis (RA): a chronic autoimmune disease with inflammation of the joints and marked deformities; something (possibly a virus) triggers an attack on the synovium by the immune system, which releases cytokines that stimulate an inflammatory reaction that can lead to the destruction of all components of the joint

 Synovitis:  inflammation of the synovial membrane that lines a synovial joint; results in pain and swelling. May occur after Injury or be a part of a generalised joint problem such as rheumatoid arthritis.

Sjögren’s Syndrome: is an autoimmune disorder in which the body’s immune system mistakenly reacts to the tissue in glands that produce moisture such as tear and salivary glands. It is a chronic, inflammatory disease that often progresses to a more complex, systemic disorder (generally affecting other organs in the body such as joints, kidneys, and intestinal tract). It is characterized by unusual infiltration of these glands that are responsible for fluid production by lymphocytes, thus causing decreased saliva (dry mouth), decreased tear production (dry eyes), and drying of other mucous membranes. Other features of this syndrome include swollen salivary glands, feeling of sand or grit in the eyes, difficulty swallowing, joint pain, and decreased sense of taste. Sjögren’s syndrome can affect anyone at any age, but about 90% of those affected are women, the majority of whom are older than 40.

Systemic lupus erythematosus (SLE, Lupus):  is an autoimmune disease. This means there is a problem with the body's normal immune system response. Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system can't tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue. This leads to chronic (long-term) inflammation.

TMJ: is the short version of Temporomandibular Joint – or jaw joint – and the surrounding muscles. TMJ disorders can be quite painful and include migraines, neck and shoulder pain, and a host of other symptoms. In addition, TMJ problems can make it difficult to eat, swallow, and yawn.

Uveitis: is swelling and irritation of the uvea, the middle layer of the eye. The uvea provides most of the blood supply to the retina.  Uveitis can be caused by autoimmune disorders such as rheumatoid arthritis or ankylosing spondylitis, infection, or exposure to toxins. However, in many cases the cause is unknown.  The most common form of uveitis is anterior uveitis, which involves inflammation in the front part of the eye. It is often called iritis because it is usually only effects the iris, the colored part of the eye. The inflammation may be associated with autoimmune diseases, but most cases occur in healthy people. The disorder may affect only one eye. It is most common in young and middle-aged people.


Medications: 
Analgesic: (also known as a painkiller) is any member of the group of drugs used to relieve pain. (Examples: Acetaminophen, Codeine, Morphine, Vicodin)

Biologics: A classification of products derived from living sources, such as humans, animals, bacteria and viruses. Vaccines, immune globulin, and anti-toxins are biologics.  (Examples: Orencia, Humira, Enbrel, Remicade, Simponi, Rituxan, Cimzia, Actemra)

Corticosteroids:  are a class of steroid hormones that are produced in the adrenal cortex. Corticosteroids are involved in a wide range of physiologic systems such as stress response, immune response and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte. (Examples: Prednisone, hydrocortisone, triamcinolone). 

Disease-modifying antirheumatic drugs  (DMARDS): A class of medications that may actually work to modify the course of rheumatoid arthritis, slowing or even stopping its progression. (Examples: Methotrexate, leflunomide (Arava), Plaquenil, azathioprine, azulfidine)

Humira: Adalimumab injection is used alone or with other medications to relieve the symptoms of certain autoimmune disorders.

Methotrexate (MTX): A chemotherapy drug/ toxic antimetabolite that limits cellular reproduction by acting as an antagonist to folic acid; used to treat certain cancers and psoriasis and rheumatoid arthritis

Nonsteroidal anti-inflammatory drugs(NSAIDS): Drugs commonly used to treat acute and chronic pain, including aspirin and ibuprofen. Undesirable side effects of this class of medication include stomach bleeding and gastrointestinal ulcers.

Prednisone (Pred): is used alone or with other medications to treat the symptoms of low corticosteroid levels (lack of certain substances that are usually produced by the body and are needed for normal body functioning).



Lab Testing/ Flare Up Terms:   

Anti-CCP: which stands for anti-cyclic citrullinated peptide antibody, is a new and exciting blood test to help doctors confirm a diagnosis of RA.  It is a very useful test to order during the diagnostic evaluation of a person who may have rheumatoid arthritis. If present in such a patient at a moderate to high level, it not only confirms the diagnosis but also may indicate that the patient is at increased risk for damage to the joints.

ANA (antinuclear antibody) Tests: Antibodies are proteins, produced by white blood cells, which normally circulate in the blood to defend against foreign invaders such as bacteria, viruses, and toxins.  Autoantibodies instead of acting against foreign invaders as normal antibodies do, attack the body's own cells.  ANAs are a unique group of autoantibodies that have the ability to attack structures in the nucleus of cells. The nucleus of a cell contains genetic material referred to as DNA.  There is an ANA (antinuclear antibody) test which can be performed on a patient's blood sample as part of the diagnostic process to detect certain autoimmune diseases.  The percentage in the blood helps determine certian illnesses, for example 25-30% ANA is found in patients with RA. 

C-Reactive Protein (CRP): is a test which measures the concentration in blood serum of a special type of protein produced in the liver that is present during episodes of acute inflammation or infection.

Effusion: discharge of fluid into a body cavity, such as the middle ear, as a result of inflammation.  Increase in the volume of a fluid in a natural cavity: for example. Effusion of the synovial fluid can cause swelling in a joint.

Flare-Up:  Doctors call the active periods of rheumatoid arthritis disease activity. During disease activity, infection-fighting cells (white blood cells) are mistakenly allowed into the joint. No one understands why this happens, but it's clear the white blood cells don't belong there.  

HCT Blood Test:  The hematocrit is the proportion, by volume, of the blood that consists of red blood cells. The hematocrit (hct) is expressed as a percentage.  The normal range for adult women: 38%-46%.  A low hematocrit is referred to as being anemic.  Higher than normal hematocrit levels can be seen in people living at high altitudes and in chronic smokers. Dehydration produces a falsely high hematocrit that disappears when proper fluid balance is restored. Some other infrequent causes of elevated hematocrit are lung disease, certain tumors, a disorder of the bone marrow known as polycythemia rubra vera, and abuse of the drug erythropoietin (Epogen) by athletes for blood doping purposes.

Inflammation: is a part of the body's healing response, characterized by swelling, redness and warmth. 
In some types of arthritis, such as RA, the body's immune system gets confused and acts as if joint cartilage doesn't belong there. The signs of joint inflammation are typical findings. This is called an autoimmune response. In other words, the demolition company starts in on an essential building that cannot be rebuilt. Sometimes the inflammation does not stop until the cartilage has been removed from the joint.

LYM Blood Test: This tests states the percentage of Lymphocytes circulating in the blood.  A lymphocyte count is usually part of a peripheral complete blood cell count and is expressed as percentage of lymphocytes to total white blood cells counted. An increase in lymphocyte concentration is usually a sign of a viral infection.  Low numbers of lymphocytes can increase your risk for infection.
MPV Blood Test:  Mean platelet volume is a machine-calculated measurement of the average size of your platelets. New platelets are larger, and an increased MPV occurs when increased numbers of platelets are being produced. MPV gives your doctor information about platelet production in your bone marrow.

Negative RA Factor (Neg RF): A negative RF test does not rule out RA or Sjögren's syndrome. About 20% of people with RA and many of those with Sjögren's syndrome will be persistently negative for RF and/or may have very low levels of RF.
Rheumatoid Factor (RF): is an immunoglobulin (antibody) which can bind to other antibodies. Antibodies are normal proteins found in the blood which function within the immune system. Rheumatoid factor though is not normally found in the general population (only found in about 1-2% of healthy people). The incidence of rheumatoid factor increases with age and about 20% of people over 65 years old have an elevated rheumatoid factor.

RA Remission: While there is no known cure for rheumatoid arthritis, up to 30% of patients may feel they are "cured" of their disease. What these patients are actually experiencing is a clinical remission. A remission in rheumatoid arthritis is defined as the absence of clinical signs of inflammation. While a very small percentage of patients may be able to discontinue their arthritis medications, more than 95% need to continue on their medication to remain in remission.

Sed Rate: A nonspecific measure of inflammatory response anywhere in the body; this test is elevated (above the normal range) in infections and a wide variety of so-called inflammatory diseases, for example rheumatoid arthritis, lupus, or inflammatory bowel disease such as Crohn disease.

TNF Inhibitor: promotes the inflammatory response, which in turn causes many of the clinical problems associated with autoimmune disorders such as rheumatoid arthritis, ankylosing spondylitis, Crohn's disease, psoriasis, hidradenitis suppurativa and refractory asthma. These disorders are sometimes treated by using a TNF inhibitor. The important side effects that have been most extensively related to TNFalpha blockers include: lymphoma, infections, congestive heart failure, demyelinating disease, a lupus-like syndrome, induction of auto-antibodies, injection site reactions, and systemic side effects.

White Blood Cell Count (WBC): the number of white blood cells present in a blood sample; useful in diagnosing and evaluating various diseases and infections.  White blood cells help fight infections. They are also called leukocytes.  An elevated WBC could be a sign of inflammation due to RA.


For more information here is a website where you can look up definitions and abbreviations of medical terminology.  http://www.medilexicon.com/ 

6 Comments:

Blogger Project Journal said...

Mal,
This is awesome, I'm so proud of you! And it was wicked quick, I assumed you'd get to it later in the week maybe. GREAT job!! Seriously awesome : )

Now, since you'll constantly be updating it, you should add it as a page at the top of your blog, like the ones I have on mine. Then people can always get to it easily without digging through old posts!
Talk to you soon,
Hannah

December 8, 2010 at 11:13 AM  
Blogger maybeitsmallory said...

Thanks! Yea I worked on it most of the day yesterday, and I had a lot of responses from some ladies on RA Chicks, so it was easy to compile a list of terms. :)

How do I do that? I'm not sure what you mean, lol! I don't know much about blogs!

December 8, 2010 at 11:17 AM  
Blogger Project Journal said...

Ugh why don't we live in the same place!? That would make this soooo much easier lol!!

Okay go to Edit Posts. Then slide over to the tab next to it that says Edit Pages. At the top of this page you'll see New Page. Just click on it and there ya go. It's set up just like a blog post, but it's permanent until you take it down. It'll stay right at the top of your blog. You can edit it the same as a post and everything.

Let me know if that made any sense or not!!
Hannah

December 8, 2010 at 12:13 PM  
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Blogger Stiven McGreat said...

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

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