It Took Me 30 Years to Learn This About Rheumatoid Arthritis Save

Rheumatoid arthritis is a tricky and, at times, problematic disorder. My first research assignment during rheumatology training was to focus on RA – in the clinic with new biospecific-targeted therapies and in the lab by studying how and why inflammatory cells gather in the joint synovium.

That was over 30 years ago, and several certainties have evolved. First, I’m much better at diagnosing and treating RA in the last 10 years compared to my first 10 years. While RA has not changed, our measures, serologic tests, understanding of risk factors, and treatments have progressed admirably. Next, the information age has delivered a new, better-informed and more inquisitive patient. Despite the time limitations in care, a smarter patient has the best chance at the best outcomes. Lastly, the last 30 years has shown me that many aspects of RA were wrongly taught, misunderstood or not apparent when I first started in rheumatology in 1984.

Today I reflect on what 30 years of practice, research and teaching have taught me about RA; many of these you won’t find in textbooks or seminal research articles.

1. RA is progressive. This is certainly known and has always been taught. We tell patients that RA will get worse, but how much is unknown. Thus, time and serial therapies are needed to know just how progressive RA will be. Uncertainties in predicting the future is one of the primary reasons to treat early and aggressively. However, for many years I thought that progressive RA was seen in those with high-risk features and a track record of nonresponse, and that there were some who actually do well. Such RA patients have milder disease, they may achieve early remission and some may even be able to stop therapy. But time has shown me these are the exceptions that should not be the rule. I’ve seen too many who started with “mild RA” or “you’re lucky it only affects your thumbs RA” who, despite conventional therapy, progressed to severe polyarticular immunologic hazards. Too many of my initially mild RA patients are now dead from RA and its cavalcade of comorbidities. Yes, RA is progressive and will be to everyone until proven otherwise. With RA, we don’t have the time or optimism to wait around for miracles. It’s best to embrace the concept of over-treating every patient to remission. Because you don’t know until it’s too late.
2. Silence kills and communication saves. If you have a complex disorder like RA, you need to talk it out. Starting at home, continuing with friends and confidants and finally with the person who writes your prescriptions and is responsible for your well-being and safety (your rheumatologist). If you or your doctors are bad at communication, oh boy, bad news ensues! Many of my patients admit to either a) no one knows about my RA (they’ve chosen to keep it secret) or b) those closest to me don’t understand my RA. In both instances, faulty and foolish noncommunication is rooted in fear, not accepting that RA is forever their problem, or worry that a support system or important person won’t be there when needed. Noncommunication with the physician is a two-way street and when suboptimal, medication adherence and compliance suffers, the patient assumes undue risks and the cost of care and ultimate musculoskeletal outcomes will be needlessly worse. Time has taught me to tell my patients they have to tell others and their family about your RA; invite them to help you along the way or come to your visits; find one person in your family or peers who will partner with you in the battle to come; and find a doctor who listens, teaches, reteaches and treats you as if you were his mother (assuming he or she likes dear old mom).
3. Boring is the goal! While the onset of RA can be a dizzying flurry of information, questions, investigations and too many medicines, patients need to understand this is the pathway to a steady state of remission or very low disease activity. Once achieved, the future is best for those who are boring! By boring, I mean their lifestyle is boring, in that it’s predictable, productive, safe and devoid of unknowns. Medications, diet, exercise, work routines, and doctors’ visits should all be boring! Boring means the follow-up visits are ideally and remarkably without side effects, no new medical problems and no joint complaints. My patients chuckle when I call them boring, thinking oh-yeah my life is plenty boring and regimented because of “my RA”. I clarify that this means disease control and long-term benefits, then they too boldly brand themselves as “still boring”.
4. Selfishness pays off. I’ve taken care of rich girls, poor girls, busy men and homeless men, singles and single moms. RA is impartial to your circumstance, finance or intelligence. In the course of lifelong RA care, patients will have to deal with the challenges of RA and its treatment while maintaining a job, a marriage, caring after others or not having the time or resources to do what’s needed. Too many people put the needs of others ahead of their own. Kids, coworkers, PTA, CEOs – they all become either bad excuses or impediments to an individual's success with RA. My best outcomes are seen in patients who are blatantly selfish about their health and what’s required to do better. Such patients are guiltless in their use of the word “no”. They put their schedule, rest, exercise, medications ahead of requests to play bridge, stay after work or cook for their spouse. The rule is simple – take care of number #1, you, yourself, the patient. Once you’ve mastered that, then you can serve all others who desperately need you.
5. Exercise for tomorrow. Too many patients have too many reasons or excuses to not exercise. These are firmly rooted in now thinking. I can’t do this or that now because of my now excuses. What they don’t realize that exercise is today’s investment in future mobility, strength and independence. Hence what do you do or don’t do today is really about your condition 10 and 20 years from now. RA is livable and manageable when you’re mobile and independent and certainly preferable to RA bound to wheelchair or at the behest of a caregiver. Remind them they have to invest in their futures.
6. Strength needed. Our objective is to alleviate pain, abrogate swelling and maintain function. While many of us believe that 60% of our patients are in remission, objective observational data show that to be fallacious. Pain leads to activity restriction, less activity leads to disuse and weakness and weakness promotes more pain. The cycle of pain and weakness has to be avoided. In the course of treating inflammation, we often neglect the loss of strength and vigor that comes with chronic RA. Improving strength is a key measure in alleviating pain. Strength can be achieved by promoting activity, prescribing specific exercises, setting goals based on vocation or avocational desires and using physical or occupational therapy liberally. The strong patient has something to look forward to; the weak patient is a victim without options.
7. It’s not the drugs that will kill ya’. RA is a hard pill to swallow. There is a significant loss of control when it comes to lifestyle and many patients view that being wedded to medications is the worse insult of all. After all, only sick or older people should have to take so many medications – why does that have to be me? Distrust and fear of medications is the most subversive belief that patients often lean to. This is not surprising as most meds don’t come with guarantees for success, they instead come with six-page warnings from the pharmacy and two minute drug commercials that look good but sound bad. The challenge here is the “risk communication” I have written about before. Of the many things that patients need to learn, foremost is that a) RA will not go away and b) the odds are far greater that RA will hurt them far more and far worse than any of the drugs we may prescribe. A quote from the movie “28 Days” applies - It's the engine (RA) that kills ya’, not the caboose (the drugs).
8. Bring 2 people, 4 ears and 6 questions. I only have 20-30 minutes two, three or four times a year to impart on my RA patients all that I know, so much of which they will never know or remember because of limited interactions. The diagnosis of RA usually affects whole families, not just a patient, yet 80-90% of all clinic visits are attended by the RA patient alone. To me this is a major mistake, a missed opportunity to know more, retain more and have greater confidence in the plan of care being offered. It’s wise to coach your patients to bring a spouse, mother or brother to each visit and between the two, bring questions about your RA, medication, future or other healthcare concerns.
9. These just don’t matter. Every rheumatologist gets these same questions all the time. They are rooted in folklore, common sense, neighborly advice or internet trolling for clues. In no particular order, here are the answers: a) No, you do not need a new bed (unless its shaped like a hammock); b) No, you don’t need to change your job; c) No, moving to a more temperate environment will not help; d) No, there isn’t a diet (other than knowledgeable, healthy eating) that will make your RA better; e) No, you can’t blame your disease on genetics; and f) Yes you will be able to have children and a family.
10. Remission is rare. Soon after the diagnosis of RA, the next predictable question is, “does this ever stop or go into remission?” or “how long will I have to take those drugs?” It is truly stunning to find out that you have now contracted a lifelong illness. Many of us don’t like to unfold the future of RA in such bleak terms, so we take a “let’s wait and see” approach and recall other patients who have gone into drug-induced or drug-free remission. Thirty years ago I learned that the frequency of drug-free remission was only 10%. With all the new advanced therapeutics and impressive outcomes, we have spent the last five or more years doing clinical trials wherein the objective was to take either early RA or established RA patients, give them a new blockbuster therapy and once they achieved remission or low disease activity, see if we could successfully withdraw therapy. Patients want this, payers want this and some doctors are ok with allowing patients to liberally ratchet back on therapy to minimize exposure, cost or concern. But the trials have essentially reinforced that which was known 30 years ago, odds of a drug-free remission is still only 10% to 15%, with the best chances seen if you intervene early enough. Thus, true remission is rare. I’d rather spend my time slaying the dragon than waiting for a miracle.