Hospital for Special Surgery Physician-in-Chief Dr. Paget recently visited the RA Workshop Support Program to dispel some myths and discuss the current realities about RA treatment and living with RA.
“You have your own concepts of the reality of the illness to you, and the personality of the illness in you,” said Dr. Paget in his introduction of the presentation, “but I’m going to provide you with some generalities in terms of the facts of the condition itself.”
Rheumatoid arthritis is due to aging, and everyone will get it eventually.
Not true. People will not experience RA simply as a result of aging. Osteoarthritis, on the other hand, is a very common “wear and tear” type of arthritis, and it has a very different presentation. Almost all of us experience this type of arthritis at one point or another – we might get it symptomatically, or we might just see it on x-rays. Commonly, you’ll see it in the back (the spine), in the fingers, or in the thumb. This type of arthritis is not a systemic illness, like RA is. That means that it doesn’t have effects outside of the joints. It’s a local process. Osteoarthritis doesn’t involve other organs the way RA does.
RA can affect joints in a way that can cause the mechanics of the joints to be altered. The body sees those altered stresses and forms secondary osteoarthritis on top of that, in an attempt to repair the damage. Many people with RA who have had joint replacements haven’t had them as a result of their RA, but rather as a result of the osteoarthritis that has affected them on top of their RA.
People most commonly develop RA from the ages of 40-55, with an average age in the early 50s. About 1/3 of people with RA develop it after the age of 60.
If I have RA, my children are likely to get it as well.
Again, this is not true. It’s a possibility that some types of arthritis run in the family, but it’s not like diabetes, where if both parents have it, the child will have it as well. We now know that even if you have genes that are associated with RA, you may not develop it. The genes are necessary, but not sufficient, to developing the disorder. Something else has to happen - some kind of environmental trigger, like a virus, for example - for someone to develop RA. In some studies, for instance, smoking, along with a genetic predisposition, has been shown to increase the risk of RA.
I should just accept my fate and not seek out optimal care.
Nothing could be farther from the truth, particularly today. The therapies are simply amazing, the new biologic agents have profoundly altered the personality of the illness, and we’re also getting to people earlier. There’s more recognition of RA, although not as much – or as early - as there should be.
It’s very important to be under the care of a rheumatologist who understands the illness and is willing to, and does, participate in a partnership with your internist. The three of you have to form a very tight partnership with strong communication. Your outcome will be dependent not only on your RA, but the rest of your health.
You’re a sissy if you complain about the joint pain and fatigue of RA.
Ridiculous. It’s a life-altering illness, and nothing is more frustrating than when someone says, “Gee, you look okay, why can’t you go out to dinner?” or “Why can’t you do this or that?”
In many ways, the fatigue associated with RA can be worse than the pain. It can be profoundly altering. Your friends and family members may not understand the nature of this fatigue. It’s likely that in their experience, when they have a viral illness and they’re in bed with aches, pains and fatigue, they can get up after a few days and return to normalcy. The aches, pains and fatigue of RA don’t resolve in the same way That’s because the immunological inflammatory reaction of your RA has a bigger, chronic impact.
You can help those close to you understand by providing them with information about your RA so they can appreciate that you’re not trying to avoid duties, responsibilities, or activities. They need to understand the nature of your RA, and “get it,” just as you do. HSS.edu and the Arthritis Foundation are good resources for written materials, and a link to the Foundation is provided at the bottom of this article.
RA is just a joint disorder, and it has no connection to my overall health.
Again, not true. Osteoarthritis is “just” a joint disorder, but RA can do much damage outside of the joints as well. It can affect internal organs. The inflammation in the joints can, for example, “spill over” to blood vessels (causing premature coronary artery disease or atherosclerosis), it can spread into the bones (causing osteoporosis), and it can even lead to an increased risk of lymphoma.
It’s so important to control the inflammatory process of RA, because all of the aforementioned problems can be decreased or eliminated if the inflammation is controlled. Therein lies the importance of the interplay between you, your internist, and your rheumatologist. You have to contend with your global health – each facet of your health depends on the others, and you’re your best advocate.
It’s profoundly and importantly intertwined with your overall health. Monitoring of your RA needs to be optimized, and you have the personal responsibility to ensure that other health issues do not fall through the cracks.
Rheumatoid arthritis is a systemic disorder. It can affect the internal organs, although that’s not as common as it was in the past. One of those tissues that can be inflamed is the eye, resulting in conditions such as scleritis.
It is well known that most internists treating a person with multiple chronic conditions may not focus on those problems that are less prominent. For this reason, it’s very important to have a specialist who is designed to treat a particular disorder.
There are no effective treatments for RA.
That is not at all true, and there are more and more amazing medications that are coming out. The illness can be controlled, along with the spillover effect of the inflammation. Joint damage can be avoided, and those who are diagnosed and treated early on can, in particular, do quite well.
The efficacy of new medications is extraordinary compared with the way they used to be. Traditional medications such as antimalarial drugs and methotrexate can still be effective for many people, but newer medications like the anti-TNF biologic medications are much better and more effective for a wide range of people. And there are more on the way. Studies have been done all over the world, and the advances that have been made are quite extraordinary.
An orthopedist is the best person to see for my RA.
If you need a hip or a knee replacement, that may be the case. Orthopedists are focused on the surgical repair of certain conditions, but their scope of practice in the treatment of rheumatic diseases is more limited in comparison with a rheumatologist. Now that a number of effective yet highly complex new medications are available for RA, it’s even more important that you see a rheumatologist for RA. Your internist or primary care physician can direct you to the proper musculoskeletal specialist for your particular issue, and, if necessary, can refer you to other specialists including physiatrists, radiologists, neurologists, or orthopedists.
It’s very important for rheumatologists and orthopedists to interact closely when dealing with RA, and HSS is an institution that’s particularly unique in this way. In most other institutions, orthopedists and rheumatologists are like Mars and Venus. They don’t interact at all. HSS’s interaction is broad – collegially, scientifically, clinically, and in a way to ensure the best outcomes. This level of collaboration is much more uncommon elsewhere.
Wherever you are treated, however, communication between your physicians and surgeons must take place, whether by fax, email, or other means, so everyone understands exactly who’s doing what, and when, and for what reason.
If I develop joint inflammation, I am destined to need joint surgery.
Absolutely not. In 1985, we did a study in which we looked at those having knee replacements, and we found that out of 300 people, 25% had RA, while the other 75% had osteoarthritis as the disorder that led to the need to have the surgery. In 2007, that percentage of RA patients is down to 5%. That’s a direct result of early diagnosis, aggressive non-surgical treatment with these new medications and, not unimportantly, aiming at an outcome and achieving it.
There is a concept in cancer therapy called “Aiming for NED,” which stands for “No Evidence of Disease.” It’s exactly what rheumatologists are aiming for today. You should accept nothing less than “Aiming for NED.” It’s how you obtain that, including what medications you use and how you tolerate them, that’s very important. You know when your RA is active, and you have to communicate that to your doctor. You need to aim for a certain goal, and your doctor should monitor your progress using a very clear scale.
It is vital to get your inflammation level down to, or close to, zero, and the patient and physician need to work together to make that happen in order to prevent or minimize joint damage. If, however, a joint is damaged to the point that you can’t stand the pain, the disability, or both, you may need to have surgery. But if it’s just inflammation, you may respond to one of these newer medicines, a local injection of steroid, or other means of treatment. There is a lot we can do before you have to resort to surgery.
Physical therapy is a waste of time.
It is certainly not a waste of time at all. It’s very important to keep active, with regard to your bones and joints, and to be guided by a professional physical or occupational therapist. They can assess your body mechanics and give important guidance on how to preserve and optimize the use of your joints, your mobility, and your overall functionality.
New therapies are too dangerous and not very effective.
Absolutely incorrect on both counts. The major fatal illnesses of the last century, such as tuberculosis, polio, syphilis, and rheumatic fever, are almost entirely gone. The reason for this is because science found out that they’re due to infections. They then developed antibiotics for those infections. Just as those plagues have gone, so will RA.
The medicines that we’re now using are controlling the immune process. They’re not a cure, because we don’t yet know the cause of RA. So we’re treating the pathogenesis, the immunology, of the illness. Sometimes as we suppress the immune system we introduce some unwanted side effects, and there is no medicine on the face of the Earth that has no side effects. But we make choices every day to weigh the benefits against the drawbacks.
We understand, upfront, exactly what the battle is, and we constantly have to work together to appreciate that. Your doctor knows the extent of your inflammation, you know what you’ll accept, and it’s a discussion, a balance, between the two.
Rheumatoid arthritis is a systemic disease, and we have to hit it early on, on all fronts.
It also tends to be a chronic illness. A recent study found, however, that those with early signs of arthritis who went on medication right away were more likely to go off the medication within a year and were able to stay off it. There may very well be a “window of opportunity” when it comes to aggressively treating RA early enough. But whenever the treatment is applied, the outcome of RA demands a close partnership between the patient, the internist, and the rheumatologist.
Autoimmunity means that a normal immune system, which is supposed to fight invaders to our system, is instead fighting our normal, healthy tissue, inflaming it as a result. We then have to reset that level of inflammation and immunity. Rheumatoid arthritis arises as a close interplay between our genes and the environment.
Inflammation can lead to joint problems and tendon damage. For this reason, RA should be considered a medical emergency, like diabetes, asthma, and/or heart problems. Collateral damage from RA can occur in the form of premature atherosclerosis and osteoporosis. Luckily, we now have medications that work very well, and early, aggressive treatment can profoundly improve the outcome. Along with medical treatment, patients should ensure that their health is otherwise in control by quitting smoking and monitoring their lipid, cholesterol, blood pressure, and weight levels
The future looks brighter than ever before for people with RA. Not only has help already come, but more is on the way. Institutions like HSS, and others around the world, have a tremendous focus on research on the causes and cures for RA.
Summary by Mike Elvin