This article and the articles to follow are intended for informational purposes only and should not be considered medical advice. Any concerns or questions you may have about steroids or any other aspect of your treatment should be discussed with your doctor.

Note: Although steroids are available in dozens of different forms and brands, for simplicity’s sake, I will refer to the oral form of steroids as Prednisone.

Prednisone: The History
After serving as the Chief of Medical Service and Director of the Army’s Rheumatism Centre during World War II, Philip Showalter Hench returned to work at the Mayo Clinic and continued his twenty year research in rheumatoid arthritis and other autoimmune disorders. By the late 1940’s, it had become clear to Hench and others that in order to bring autoimmune diseases under control, it was necessary to suppress inflammation and the immune system. However, finding an effective agent remained elusive.

It was during this search that Hench began to notice a certain phenomenon among his patients. During pregnancy and in the presence of jaundice, the severe pain of rheumatoid arthritis decreased and in some cases, even disappeared. Hench, along with his colleague, Edward Calvin Kendall, began to consider the steroids of the adrenal glands as the endogenous substance “X” by which RA might be controlled and even cured, saying:

“Substance X…probably was a biologic compound specific in nature and function, one which was normal to the human organism and of which, perhaps, the arthritis patient did not have enough. Since pregnancy alters the concentrations of hormones, we began to suspect that substance X might be a bisexual steroid hormone.”

In 1948, Hench and Kendall tested their theory on a middle-aged woman afflicted with severe RA. After receiving a series of corticosteroid injections over several weeks, the woman’s symptoms disappeared and she got up and walked away from the bed in which she had been confined for several years.

Amazed by the results, Hench and Kendall treated other similarly affected patients. After only a few days, people who were so badly crippled that they couldn’t rise from a chair, shave, open a door or even lift a cup were walking and even dancing. Medical experts throughout the world hailed cortisone as a “miracle drug” and a cure for rheumatoid arthritis. Not surprisingly, P.S. Hench and E.C. Kendall were awarded the 1950 Nobel Prize in Physiology and Medicine.

By then, however, steroids were beginning to show its dark side. Patients taking cortisone in doses high enough to reduce inflammation were experiencing the now well-known side effects: increased appetite and weight gain; fat deposits in chest, face, upper back and stomach; water and salt retention leading to swelling and edema; high blood pressure; diabetes; osteoporosis; cataracts; acne; muscle weakness; thinning of the skin; increased susceptibility to infection; stomach ulcers; psychological problems such as depression; and adrenal suppression and crisis. In some cases, the cure became worse than the disease.

Prednisone Today

Despite the risk of dangerous side effects, however, cortisone treatment is still very much in use, simply because it is often the only effective drug available. Prednisone is used to treat hundreds of disorders, many forms of cancer, including leukemia; lupus, vasculitis, asthma, meningitis, ulcerative colitis,  allergies, tuberculosis, Myasthenia Gravis, dozens of skin disorders, including psoriasis; eye disease, pneumonitis, vasculitis, organ transplants (to prevent the body’s normal inflammatory reaction to foreign tissue and infection), and even autism.

Unfortunately, many people (and in some cases, doctors) have become so leery of “scare-oids” that they have refused much-needed treatment. And, while it is true that long-term use of Prednisone at high doses can cause serious side effects, when used judiciously, Prednisone can literally be a life-saver, especially when inflammation in the heart, lung, eyes and blood vessels are involved. A severe flare can cause extensive damage to joints and cartilage over time, but even in the most severe cases, Prednisone can often provide immediate relief.

Really? Well, who would ever guess?

Apparently, not the researchers who conduct these very expensive, often taxpayer supported studies. Personally, I would like to use some of my wasted tax dollars to pay off some of my medical debts…or, here’s an idea: maybe I could use the money to get a couple of degrees so I, too, could afford to have arthritis.

Sorry. Guess that struck a nerve.

Still, if it weren’t for comments like that, the odious expression “Well, duh!” would have fallen the way of “far out” and “radical, dude!” into slang death. Of course, well-to-do people deal with RA better…they’re the few people in this country who can afford RA. Not only can they afford a rheumatologist, they can afford to go to Mayo or Duke or Johns Hopkins to get the full arthritis spa treatment: JAMA superstar rheumatologist, specially trained nurse, physical therapist, occupational therapist and even a psychiatrist to help with the transition. Afterwards, they can drive straight to their pharmacist with a prescription for Enbrel—absolutely secure in the fact that their insurance will cover it—and go back to their jobs which involve telling other people what they should build/design/type.

So, do I resent rich people? Hell, no. I resent that I can’t afford to be healthy. Without a doubt, America offers the finest medical training, technology and treatment in the world and yet we are ranked 12th in health care. (Italy, if you are interested, ranks number one). Sin is not a word that I frequently use, but I truly believe that it is a sin for anyone to be denied adequate medical care because they lack money…and as much as I love this great country of ours (and who isn’t patriotic, these days?), I believe that this have/have not system of health care is one of its greatest shortcomings.

Often, while on this subject, someone will say to me, “Yes, and look at the animals in prison. All of their medical treatment is paid for by you and me…” usually followed by the suggestion that bad people be put in a dungeon/ on a deserted island/ to death. My beliefs are even more radical: I believe that all members of the species Homo sapiens—even those of the slimy, single-cell variety—are entitled to health care. I honestly believe that it is our right as human beings to be treated when we are sick, no matter what our financial situation.

Don’t get me wrong: I may be a pinko, commie liberal, but I don’t have the first clue as to how to reform the health care system; I also respect that doctors, pharmaceutical companies and insurance companies would like to enjoy the fruits of a free market society as much as the next guy. (I also recognize that—given the times—it may be years before health care reform is even mentioned again).

I do, however, have an idea on how to get the lawmakers in this country to at least think about the high costs of health care: let’s take away their fancy health benefits. Why not? You and I pay for it, we should be able stop paying for it. Let these fat cats pay for their own colonoscopies and bypass surgeries. Maybe after shelling out $300-$1500 a month for prescriptions, they might decide it’s in their best interest to spend a little time studying solutions for an overlooked national crisis.

In the Meantime…

Some of the more astute readers out there may have detected that I am slightly bitter about this issue. You’re wrong…I’m very bitter. I’ve just concluded a two-year fight with my insurance company over Remicaide (they have finally conceded, if only to shut me up…but they still won’t pay for Enbrel), and while I am grateful to finally be able to use Remicaide, I can’t help but be angry for that wasted time, for all those flares, for the new deformities, and…for all those other people out there who are slowly being crippled because they, too, can’t afford to be healthy.

Or can they? Those who can afford to shell out $12,000 a year for Remicaide/Enbrel can afford the Cadillac-brand of health insurance that already pays 100% of prescription/hospitalization. And I’m not talking about the truly poor, who can qualify for Medicaid—which also pays out 100%. I’m talking about people whose insurance pays 70 or 80%. I’m talking about me (because when I really get angry, it’s usually because I’m mad at myself).

It wasn’t that my insurance company wouldn’t pay for Remicaide at all…it was that (and I won’t bore you with the details of why) they would only pay 70%. Well, by my calculations, 70% of $12,000=forget it. So I fought them and did without for two years, limping about the house and secretly resenting my husband for not saying, “Just go ahead and do it…we’ll manage somehow.”

And I’m the one who hates martyrs.

I know that I’ve used this analogy before, so bear with me: if I had cancer, I would do whatever it took to get well. If I had to hold fundraisers, collect cans by the side of the road, sell my body for pocket change…you name it, I would do it. So why didn’t I take my own treatment as seriously? Rheumatoid arthritis, if not treated, can ultimately be fatal. But, because it’s not fatal tomorrow, I think that many of us are shortchanging our health because we don’t want to add (more) financial strain on our families.

I’ve said it before and I’ll say it many times again: medicine is just as important as food. Just as you don’t need to ask permission to eat, you don’t need anybody’s permission to pay for proper medical treatment.

Are you sure you can’t afford your medical care? Do you have cable? Do you drive a late-model car? Do you cave when your children insist on labels instead of clothes? Most of us could cut expenses if we had to….and guess what, we have to.

And, because I am psychic (a lie…if I were psychic, I would be rich and this article probably wouldn’t even occur to me), I know what many of you are probably saying by now: haven’t I sacrificed enough? Hasn’t my family? Yes, of course you have…it’s obscene how much many of us have sacrificed and I doubt that any of us have unaffected families, either. But suppose the treatment you are denying yourself really worked! Perhaps you would even feel well enough to get/retain a job. In other words, denying yourself adequate medical treatment may actually be an exercise in false economy.

Please do not get me wrong. Smile warrior that I am, I am also deeply in debt. Even with insurance grudgingly picking up 90% of the tab, my medical expenses run roughly $300-$500 a month…and that’s not including treatment for my son’s asthma or my daughter’s chronic—and very debilitating—migraines. Every month, I scheme and scramble—through eBay or making and selling this and that—to come up with a hundred here and there to at least put a dent in our debt and keep my already-resentful husband from going on one of his tirades.

It has occurred to me that not only will some people remain silent in the face of need, they will sleep well at night if you are crippled because of it…and to hell with that. Even I’m not that much of a martyr.

So, though I scheme and scramble, I also remain resolute: I will get proper treatment…if I have to sell my soul to the hospital, I will not go without proper medical care again, nor will I ask permission to do so. And neither should you.

Is your doctor a board certified rheumatologist? If not, you might be cheating yourself out of the care you deserve. Ask yourself this question: if you had cancer, would you see a family practitioner or an oncologist? That may sound extreme, but if not treated properly, RA can potentially be fatal. So, while your PCP may the ideal doctor to maintain your general health, a disease as complex as rheumatoid arthritis needs to be treated by a specialist.

A Rheuma-who?

According to the American College of Rheumatology (ACR), a rheumatologist is “an internist or pediatrician who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Furthermore, many rheumatologists also conduct research to determine the cause and better treatments for these disabling and sometimes fatal diseases.” And if you have experienced persistent pain in your joints, muscles or connective tissues—especially if symptoms persist for six weeks or longer—a rheumatologist is the doctor you should see.

It is estimated that there are over 100 different types of arthritic diseases (some say as many as 175). Anything ranging from infection to cancer can look like or be involved with joint pain. While all doctors study rheumatic conditions, it would be impossible for the average PCP to stay current on all the different types of diseases and treatments. Even if your PCP is a top-notch physician, he/she can not measure up to the educational standards of a rheumatologist:

* Four years medical school (internal medicine or pediatrics)
* 2-3 years specialized rheumatology training in the rheumatology department of a working hospital
* Since most rheumatologists choose to become certified, they must pass a rigorous exam conducted by the American Board of Internal Medicine
* Many rheumatologists also participate in regular continuing education programs

And rheumatologists aren’t limited to treating the more than 100 different types of arthritis. They also treat certain autoimmune diseases such as lupus, back pain, osteoporosis, musculoskeletal pain disorders such as fibromyalgia, and tendonitis. Their education and experience allow them to accurately evaluate symptoms and determine the correct diagnosis. The importance of early diagnosis in arthritic conditions (particularly RA) has been proven, but often symptoms are difficult for the average doctor to diagnose.

For example, if a patient is suspected of having RA, most doctors will routinely test their blood for presence of the rheumatoid factor. However, it is estimated that 25% of people with rheumatoid arthritis are known as seronegative and will never develop the rheumatoid factor. Moreover, the rheumatoid factor has also been found in people with other autoimmune diseases, such as lupus, mononucleosis and even leukemia. So how can a doctor really know whether a patient has RA or some other condition?

A rheumatologist will be able to tell because he/she has been specially trained to correctly analyze specific blood tests. He has also been trained to take a complete medical history, to give the patient a comprehensive physical exam, and what to look for when viewing diagnostic x-rays. After carefully listening to the patient and analyzing the data, a rheumatologist will be able to pinpoint certain patterns of symptoms that another doctor might overlook. Once he/she diagnoses the disease, an individualized treatment plan will be prescribed.

Brave New World

We are fortunate that—if we must have arthritis—this is the time to have it. In the past few decades, many RA patients were treated with little more than aspirin and Prednisone. We still have aspirin and Prednisone, but now we also have NSAIDS, COX-II inhibitors like Celebrex, disease-modifying anti-rheumatic drugs (DMARDs) like methotrexate and Arava and the new biologic agents, Enbrel and Remicaide. Yet recently, I met a woman who had been diagnosed with rheumatoid arthritis and her family practitioner had prescribed only naproxen. She was in a great deal of pain, but accepted it because her doctor had told her, “You’re just going to have to learn to live with pain.”

Since rheumatologists recognize that treatments of arthritic conditions are changing (and improving) rapidly, many of them participate in ongoing educational programs to be as current as possible. Just a few years ago, even rheumatologists began treating new patients with only NSAIDs and maybe Plaquenil. If his or her symptoms did not improve, then they might try corticosteroids and DMARDs. Now, however, many rheumatologists believe in more aggressive treatment, often starting a patient on a DMARD like methotrexate and then escalating to “combination therapy” (e.g. biologic agent such as Remicaide in combination with a DMARD) if they don’t respond. This new, “aggressive” approach minimizes the chance for deformity, disability and lessens the severity of the symptoms. In rare cases, it could possibly bring about spontaneous remission.

These drugs are not without risks, however, and your rheumatologist is the most qualified doctor to monitor these drugs for possible side effects or drug interactions. He or she is also well versed in other forms of treatment, such as the use of heat/ice, exercises and orthotics and can provide referrals to appropriate professionals or agencies. If asked, he/she can even refer some patients to clinical trials. Often, patients don’t mind being a “guinea pig” if there is a chance of lessening their symptoms.

Someone once told me, “You have completed successful rheumatology training when you can look patients in the eye and say ‘I don’t know’”.

Steven S. Overman, M.D.

“I Can’t See a Rheumatologist Because…

Still, only a minority of RA patients see a rheumatologist. Many people are under the misconception that they can’t afford a rheumatologist. And it’s true—a specialist does charge more money than a family practitioner. In the long run, however, a rheumatologist could actually help you save money. A rheumatologist saves you money by:

* Diagnosing your condition more quickly
By diagnosing your condition/disease more quickly than a PCP, you are able to avoid unnecessary blood tests, office visits and second or third opinions.
* Specially tailoring your treatment
By pinpointing which treatment is best for you, you save money on unnecessary and possibly ineffective treatments.
* Reducing the severity of your symptoms
Which could lead to you keeping or attaining employment; it also prevents the kind of deformities that could lead to permanent disability.

But sometimes seeing a rheumatologist is easier said than done. Unfortunately, there are thousands more people with arthritis than there are rheumatologists and the rheumatologists out there are spread pretty thin. I drive 90 miles round-trip to see my rheumatologist…and consider myself lucky. Often, people (especially in rural areas) live hundreds of miles away from a qualified rheumatologist…and if they felt well enough to drive hundreds of miles, they probably wouldn’t need a rheumatologist. Still, one might be closer than you think. If you would like help in locating a certified rheumatologist, ACR offers a Geographic Membership Directory.

So, you found a rheumatologist, but your insurance won’t pay for a specialist? Fight. You heard me—fight them and don’t give up until you get a satisfactory answer. You are entitled to appeal any decision that you feel is unfair. If you have exhausted all of your appeals and you still haven’t found satisfaction, contact you state insurance commissioner. You’d be surprised how a call from the insurance commissioner can lead to results. In the meantime, there are other sources of financial aid. ACR lists several sources of Assistance . Don’t let pride stand in the way of your health!

But My Doctor’s So Nice!

Sure he is…but he is also a professional and should be able to recognize his limitations. According to a study published by the Journal of American Medical Association (JAMA), 1355 patients with RA were followed for 3.9 years. 45%-60% were treated by a family practitioner, while rheumatologists treated the remaining patients. Researchers found that the quality of care for those patients without rheumatologists was insufficient. However, the family practitioners were superior to the rheumatologists in providing basic health maintenance.

In other words, this isn’t about firing your doctor. Ideally, your rheumatologist and your PCP should work as a team, consulting each other whenever there is a question or a problem. Nowadays, most PCPs will automatically refer any patient with an arthritic condition to a rheumatologist, anyway (assuming availability). And if he/she is offended by the suggestion, you not only need a rheumatologist, you need a new PCP…someone with a sounder self-esteem.