03 April 2012

#HAWMC Post #3

If I had a secret power, I think it would be the power to change the thinking of healthy people who pooh pooh the thought that rheumatoid arthritis (RA) and the other types of arthritis that are considered types of autoimmune arthritis (AIA)* are serious diseases. Many times these same people think that anything with the word "arthritis" in it is  easily treated with ibuprofen and other types of NSAIDs.

When most people hear the term "arthritis", they tend to picture the type of arthritis brought on by years of wear and tear, overuse or through injury; more generally, the type that affects elderly adults. That type is of arthritis is osteoarthritis (OA). The major difference between RA and OA is that OA is NOT caused by the immune system, and RA is. OA can be helped by ibuprofen and other types of NSAIDs. While RA cannot be fully treated by those medications, many people with RA do take them, in addition to a number of other more serious medications (more on that later).

RA is the most common type of autoimmune arthritis. At least 1.3 million U.S. adults have RA. RA has long been feared as as one of the most disabling types of arthritis. People with RA have a higher risk of heart disease and stroke. They also tend to have a shortened life span of about 10 years or so the last I checked. Another difference between RA and OA is that RA can lead to death in some cases; generally those cases are people who do not respond well to medications, or who went untreated. Many people criticize me for even daring to mention that fact at times, but I'd rather know the whole truth than be hit with something when it is too late to do anything about it.

Here is some information on rheumatoid arthritis from the American College of Rheumatology's page on  Patient Education - Rheumatoid Arthritis:

What is rheumatoid arthritis?

RA is a chronic (long-term) disease that causes pain, stiffness, swelling and limited motion and function of many joints. While RA can affect any joint, the small joints in the hands and feet tend to be involved most often. Inflammation sometimes can affect organs as well, for instance, the eyes or lungs.

The stiffness seen in active RA is most often worst in the morning. It may last one to two hours (or even the whole day). Stiffness for a long time in the morning is a clue that you may have RA, since few other arthritic diseases behave this way. For instance, osteoarthritis most often does not cause prolonged morning stiffness.

Other signs and symptoms that can occur in RA include:
  • Loss of energy
  • Low fevers
  • Loss of appetite
  • Dry eyes and mouth from a related health problem, Sjogren's syndrome
  • Firm lumps, called rheumatoid nodules, which grow beneath the skin in places such as the elbow and hand

The normal joint structure appears on the left. On the right is the joint with rheumatoid arthritis. RA causes synovitis, pain and swelling of the synovium (the tissue that lines the joint). This can make cartilage (the tissue that cushions between joints) and bone erode, or wear away.

What causes rheumatoid arthritis?

RA is an autoimmune disease. This means that certain cells of the immune system do not work properly and start attacking healthy tissues — the joints in RA. The cause of RA is not known. Yet, new research is giving us a better idea of what makes the immune system attack the body and create inflammation. In RA, the focus of the inflammation is in the synovium, the tissue that lines the joint. Immune cells release inflammation-causing chemicals. These chemicals can damage cartilage (the tissue that cushions between joints) and bone.

Other things likely play a role in RA as well. For instance, genes that affect the immune system may make some people more prone to getting RA.

Who gets rheumatoid arthritis?

RA is the most common form of autoimmune arthritis, affecting more than 1.3 million Americans. Of these, about 75% are women. In fact, 1–3% of women may get rheumatoid arthritis in their lifetime. The disease most often begins between the fourth and sixth decades of life. However, RA can start at any age.

How is rheumatoid arthritis diagnosed?

RA can be hard to detect because it may begin with subtle symptoms, such as achy joints or a little stiffness in the morning. Also, many diseases behave like RA early on. For this reason, if you or your primary care physician thinks you have RA, you should see a rheumatologist. A rheumatologist is a physician with the skill and knowledge to reach a correct diagnosis of RA and to make the most suitable treatment plan.

Diagnosis of RA depends on the symptoms and results of a physical exam, such as warmth, swelling and pain in the joints. Some blood tests also can help confirm RA. Telltale signs include:
  • Anemia (a low red blood cell count)
  • Rheumatoid factor (an antibody, or blood protein, found in about 80% of patients with RA in time, but in as few as 30% at the start of arthritis)
  • Antibodies to cyclic citrullinated peptides (pieces of proteins), or anti-CCP for short (found in 60–70% of patients with RA)
  • Elevated erythrocyte sedimentation rate (a blood test that, in most patients with RA, confirms the amount of inflammation in the joints)
X-rays can help in detecting RA, but may not show anything abnormal in early arthritis. Even so, these first X-rays may be useful later to show if the disease is progressing. Often, MRI and ultrasound scanning are done to help judge the severity of RA.

There is no single test that confirms an RA diagnosis for most patients with this disease. (This is above all true for patients who have had symptoms fewer than six months.) Rather, a doctor makes the diagnosis by looking at the symptoms and results from the physical exam, lab tests and X-rays.

How is rheumatoid arthritis treated?

Therapy for RA has improved greatly in the past 30 years. Current treatments give most patients good or excellent relief of symptoms and let them keep functioning at, or near, normal levels. With the right medications, many patients can achieve “remission” — that is, have no signs of active disease.

There is no cure for RA. The goal of treatment is to lessen your symptoms and poor function. Doctors do this by starting proper medical therapy as soon as possible, before your joints have lasting damage. No single treatment works for all patients. Many people with RA must change their treatment at least once during their lifetime.

Good control of RA requires early diagnosis and, at times, aggressive treatment. Thus, patients with a diagnosis of RA should begin their treatment with disease-modifying antirheumatic drugs — referred to as DMARDs. These drugs not only relieve symptoms but also slow progression of the disease. Often, doctors prescribe DMARDs along with nonsteroidal anti-inflammatory drugs or NSAIDs and/or low-dose corticosteroids, to lower swelling, pain and fever. DMARDs have greatly improved the symptoms, function and quality of life for nearly all patients with RA. Ask your rheumatologist about the need for DMARD therapy and the risks and benefits of these drugs.

Common DMARDs include methotrexate (brand names include Rheumatrex®  and Folex®), leflunomide (Arava), hydroxychloroquine (Plaquenil) and sulfasalazine (Azulfidine). Older DMARDs include gold, given as a pill — auranofin (Ridaura) — or more often as an injection into a muscle (such as Myochrysine). The antibiotic minocycline (e.g., Minocin, Dynacin and Vectrin) also is a DMARD, as are the immune suppressants azathioprine (Imuran) and cyclosporine (Sandimmune and Neoral). These three drugs and gold are rarely prescribed for RA these days because other drugs work better or have fewer side effects.

Patients with more serious disease may need medications called biologic response modifiers or “biologic agents.” They can target the parts of the immune system and the signals that lead to inflammation and joint and tissue damage. These medications are also DMARDs. FDA-approved drugs of this type include abatacept (Orencia), adalimumab (Humira), anakinra (Kineret), certolizumab (Cimzia), etanercept (Enbrel), golimumab (Simponi) infliximab (Remicade), rituximab (Rituxan) and tocilizumab (Actemra). Most often, patients take these drugs with methotrexate, as the mix of medicines is more helpful.

The best treatment of RA needs more than medicines alone. Patient education, such as how to cope with RA, also is important. Proper care requires the expertise of a team of providers, including rheumatologists, primary care physicians, and physical and occupational therapists. You will need frequent visits through the year with your rheumatologist. These checkups let your doctor track the course of your disease and check for any side effects of your medications. You likely also will need to repeat blood tests and X-rays or ultrasounds from time to time.

What is the broader health impact of rheumatoid arthritis?

Research shows that people with RA, mainly those whose disease is not well controlled, have a higher risk for heart disease and stroke. Talk with your doctor about these risks and ways to lower them.

Living with rheumatoid arthritis

It is important to be physically active most of the time, but to sometimes scale back activities when the disease flares. In general, rest is helpful when a joint is inflamed, or when you feel tired. At these times, do gentle range-of-motion exercises, such as stretching. This will keep the joint flexible.

When you feel better, do low-impact aerobic exercises, such as walking, and exercises to boost muscle strength. This will improve your overall health and reduce pressure on your joints. A physical or occupational therapist can help you find which types of activities are best for you, and at what level or pace you should do them.

Finding that you have a chronic illness is a life-changing event. It can cause worry and sometimes feelings of isolation or depression. Thanks to greatly improved treatments, these feelings tend to decrease with time as energy improves, and pain and stiffness decrease. Discuss these normal feelings with your health care providers. They can provide helpful information and resources.

Points to remember

  • Newer treatments are effective. RA drugs have greatly improved outcomes for patients. For most people with RA, early treatment can control joint pain and swelling, and lessen joint damage.
  • Seek an expert in arthritis: a rheumatologist. Expertise is vital to make an early diagnosis of RA and to rule out diseases that mimic RA, thus avoiding unneeded tests and treatments. A doctor who is an expert in RA also can design a customized treatment plan that is best suited for you. Therefore, the rheumatologist, working with the primary care physician and other health care providers, should supervise the treatment of the patient with RA.
  • Start treatment early. Studies show that people who receive early treatment for RA feel better sooner and more often, and are more likely to lead an active life. They also are less likely to have the type of joint damage that leads to joint replacement.

The rheumatologist's role in the treatment of rheumatoid arthritis

RA is a complex disease, but many advances in treatment have occurred recently. Rheumatologists are doctors who are experts in diagnosing and treating arthritis and other diseases of the joints, muscles and bones. Thus, they are best qualified to make a proper diagnosis of RA. They can also advise patients about the best treatment options

Rheumatoid arthritis affects the wrist and the small joints of the hand, including the knuckles and the middle joints of the fingers. 

The above information from the ACR is helpful in explaining the technical things about RA. Of course it doesn't tell what living with RA can be like for people affected by it.  For that you can read my own piece on What RA is Like: A Letter For Family and Friends which gives a bit of a glimpse at some of the things people with RA deal with. 

But, my super power would be to get people to realize just how serious AIA is, what affect it can have on people who live with it.  Make no mistake about it, it doesn't just affect the one who has it but it also affects the people they are closest to, their families who watch them struggle to fight the pain, stiffness, swelling, med side effects, etc.
* Below is an explanation about the term "autoimmune arthritis (AIA)" from the International Autoimmune Arthritis Movement (IAAM):
IAAM introduced the term "Autoimmune Arthritis" to the community in 2009, as a movement of creating awareness about these misunderstood diseases.  By 2010 several blogs, web pages and organizations adopted the term and it grew in popularity through 2011.  In 2012, "Autoimmune Arthritis" has developed into the politically correct phrase to describe a specific group of illnesses.

IAAM and a Rheumatology Board defined Autoimmune Arthritis as:
autoimmune diseases primarily affecting the joints. They are caused by a malfunctioning immune system.  While joint involvement is a primary factor, because they are systemic (whole body) they also affect the connective and soft tissues and even organs.

[Types of autoimmune arthritis] Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren's Syndrome (SS), Systemic Lupus Erythematosis (SLE), Still's Disease, Juvenile Arthritis (JA), Mixed and Undifferentiated Connective Tissue Diseases (MCTD/UCTD)

IAAM has partnered with a team of Rheumatologists to determine which diseases should be classified as "Autoimmune Arthritis" based on the definition above.  Those listed here were determined, by the Rheumatology Board, to be Primary Autoimmune Arthritis diseases, or those that share the most common symptoms, onset, and treatment. We will continue working with the Rheumatology Board to expand this list and to add related diseases. The term "Autoimmune Arthritis" is pending international trademark, circa use in commerce 2010.
IAAM has created World Autoimmune Arthritis Day (WAAD) to spread awareness about AIA. What in the world is WAAD? World Autoimmune Arthritis Day is aimed to bring global  awareness while learning more about your disease and ways to manage it best.  WAAD will begin when the 1st world time zone strikes midnight and will end when the last world time zone strikes midnight of the 21st. 

The WAAD event will be an online Virtual Convention, comprised of mainly one, online location. However, you will also find sponsors and nonprofit information on this website and the Facebook Page.  Also every six (6) hours you can participate in LIVE Call to Action announcements, posted on both Facebook and Twitter, that will provide directions for raising immediate public awareness with the rest of the world!
 At the Virtual Convention (outside of the website, Facebook and Twitter) you will find:
-LIVE and ON DEMAND Presentations with subjects including:
“Who Am I Now? Living with Unexpected Disability”
“Working Around Your Disability- From Cooking to Daily Tasks”
“Building Your Self Image”, “Parenting a JAer”
“Supporting Someone with the Disease” & more!  
-Several Chat Sessions and a Chat Room for socializing 
 -Virtual Vendor Booths and a Resource Room where you can download free materials from all vendors, speakers and nonprofits!
Every six (6) hours you can participate in LIVE Call to Action announcements, providing directions for raising immediate public awareness with the rest of the world! Website, Facebook Page & Twitter Additional presentations & resources will be available!
Who Should Register?  Patients of all ages, Parents of JAers & Supporters
What are you waiting for? Join us for the 1st World Autoimmune Arthritis Day and start spreading awareness today!
Register NOW and receive notification of the official schedule, programs, organizations that will be involved, vendor discounts, a chance to submit YOUR OWN story for featuring during WAAD and MORE!
Join Us any time during May 20th, 2012 to celebrate awareness and bringing attention to the Autoimmune Arthritis Diseases!

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