10 Things I Wish Everyone Knew About Rheumatoid Arthritis (RA)
I’m not just writing this article as an advocate for RA; I’m also a patient. I was diagnosed in 2004 after experiencing several years of diffuse symptoms and illnesses which doctors couldn’t seem to string together as being autoimmune-related.
By not beginning treatment early on, my chances for any remission in my disease were significantly reduced. In fact, within five years of my diagnosis, I was forced to leave my career job and file for permanent disability.
There are many misconceptions about RA, so I wanted to help raise awareness about it. Rheumatoid arthritis (RA) is not your grandmother’s arthritis. It’s not caused by wear and tear or injury to the joints. You can’t eat gin soaked raisins or Jell-O and be cured. It's a chronic, systemic disease with periods of higher disease activity, called “flares,” and periods of little to no activity, considered clinical remission.
Unfortunately, the vast majority are not able to achieve remission that lasts for any extended period, if at all. Many are chronic; constantly in some level of a flare. So, let’s explore some facts about RA that most people don’t know:
1. Rheumatoid arthritis is an autoimmune arthritis disease.
Autoimmune diseases occur due to a faulty immune system, causing them to act against a persons’ own internal defense system. The body then produces antibodies that attack healthy cells and tissues, causing pain and inflammation in the joints, connective and soft tissues, and organs. The damage can lead to disability and even contribute to death. Scientists believe it happens as a result of a perfect storm: genetic predisposition, environment, and hormones.
2. Life expectancy is shortened.
Not only must patients with autoimmune arthritis live with a potentially crippling disease, but they must come to terms with the fact they might die earlier than expected. Little wonder that patients often suffer from depression and anxiety disorders.
3. Age isn’t a factor.
At least 1.3 million U.S. adults have RA (75% are women), and nearly 300,000 American children suffer from some form of juvenile arthritis, which causes the same type of pain, disability and symptoms that adults with autoimmune arthritis experience.
4. Disability is not uncommon.
Inflammatory rheumatic diseases with arthritis cause more disability in America than heart disease, cancer or diabetes. Disability is even higher among patients who were not promptly diagnosed and treated for their RA. If not properly addressed early in the disease, 60% of patients may experience permanent disability 10 years after onset.
5. There’s a window of opportunity.
A great deal of research substantiates that early and aggressive treatment significantly improves patient outcomes in RA and other Autoimmune Arthritis diseases. This can not only improve long-term function but may also increase chances of achieving disease remission.
”Remission” is a term used to explain a low level of disease activity. Therefore, remission does not necessarily mean the RA and its symptoms have disappeared. Any damage to the joints, tissues, and organs that occurs is permanent; therefore, even if a patient achieves remission, the damage, which may involve chronic pain, will still be present.
6. There is no cure.
The goal of treatment is to reduce symptoms and improve mobility. Medical therapy should be started as soon as possible, before joints sustain lasting damage, as damage begins early in the disease. No single treatment works for all patients because each person’s immune system is unique. Often several combinations must be tried before discovering the “cocktail” of medications that work best. Some people find alternative medicine to be helpful, but there is no scientific evidence that these treatments are effective.
7. The chronic inflammation associated with RA makes patients two times more likely to develop heart disease than the average person.
It can also damage other vital organs including the lungs, nervous system, kidneys, skin and eyes.
8. Candida is not a known cause of autoimmune disease.
Studies have established the possibility that infections or illnesses, in combination with other factors (see #1), may trigger autoimmune arthritis diseases. However, candida itself is not a known symptom of RA, but often a potential consequence of the disease.
9. RA treatment is expensive!
Recent figures showed arthritis and rheumatic disease care cost $127.8 billion, compared to $124.6 billion for cancer care. First line medications for RA, disease-modifying anti-rheumatic drugs (DMARDs), help reduce pain and inflammation and can also slow progression of the disease. These low-dose chemotherapy and anti-malarial drugs may be given alone or, in more severe cases, in combination with biologic response modifiers or “biologic agents”, which target the parts of the immune system that lead to the inflammation that cause joint and tissue damage. Biologics are mainly administered as injections or infusions weekly or monthly, cost anywhere from $2,500 to $20,000 per treatment, and are not always covered by insurance.
10. Diagnosis of RA is tricky.
It depends on the patient’s history, symptoms, physical exam, and blood tests. However, due to the dire need for early diagnosis, in 2010 the American College of Rheumatology changed the diagnostic criteria to allow for a clinical diagnosis without positive blood work (called “sero-negative RA”).
Rheumatoid Arthritis and all the Autoimmune Arthritis diseases are complex, life-altering diseases which require a great deal of work to manage effectively. But, if diagnosis and treatment begins early and the right treatment combination is found, patients can obtain better quality of life, with less permanent damage to joints, tissues, or organs.
11. Don’t give up!
One of the most difficult things to deal with as a patient with an autoimmune arthritis disease is what’s known as a “loss of identity.” Many have to give up the jobs they’ve done for years, their favorite hobbies and sports. In addition, the obnoxious fatigue and overwhelming pain make it difficult for them to keep up with their friends and family, causing them to frequently cancel on social engagements. Suddenly, they no longer feel like the same person they once were, and they aren’t sure where to direct their anger, their energy, or their passion. There are wonderful organizations that help patients cope with their disease day-to-day by providing educational materials, support, and allowing them volunteering opportunities to help them feel empowered.
Some organizations to check out would be the American College of Rheumatology, the American Autoimmune Related Disease Association, National Institute of Arthritis, Musculoskeletal and Skin Diseases, and the Arthritis Foundation, as well as checking out RA Support pages on Facebook such as RA Chicks.
Tami Brown is Co-Founder of the International Foundation for Autoimmune Arthritis, the first non-profit committed to eliminating the adversity caused by autoimmune arthritis by uniting resources that will raise global awareness, providing wellness education and support, and promoting patient-centered research that will improve the quality of life for those affected by these diseases. She’s also Project Manager for their Media Awareness Hotline, resolving false or misleading information published or broadcasted about the Autoimmune Arthritis diseases reported in the Media. She is a staunch advocate for her cause, and has served as a Patient Advocate for the American College of Rheumatology the past 4 years, and is currently serving a 2-year commitment on a Merit Review Panel with the Patient Centered Outcomes Research Institute. She can be reached through the Foundation’s Facebook page.