This case history has been disguised at the subject’s request. Dr. Doe, a gerontologist, lives and practices in a Virginia suburb of Washington, D.C.
I had my first symptoms of rheumatoid arthritis in the fall of 1984. They began as neck pains, and at first I suspected the cause was the position of my head on the pillow during sleep. Although they were worst in the mornings, they pretty well disappeared after an hour or two, and there were some days when I didn’t have any pains at all. But after they had persisted intermittently for about a month, I went to my family doctor for a test of my RA factor. (The RA, or rheumatoid factor, is a relatively recent discovery and has proven to be very valuable in the diagnosis of rheumatoid disease.) The result was positive, and he sent me to a rheumatologist.
By the time I kept that second appointment another two weeks had passed, and the pain had spread to my right shoulder. Part of my practice as a physician involves physical exertion in dealing with elderly patients, and I found the condition was beginning to interfere with my ability to help them on and off the table and to assist them in changing positions during examinations. However, I saw the rheumatologist in the afternoon at a time when my pain wasn’t bothering me, and he said to me, “Well, Doctor, you look just fine,” and gave me a prescription for ibuprofen, an anti-inflammatory analgesic which had already been prescribed by my family physician.
A week later my shoulder and neck bothered me so badly I called the rheumatologist again. His answering service told me he had gone on vacation, and I left my name for the doctor who was taking his cases; that doctor, who knew nothing about me, didn’t bother to return my call for three days, and by then I was in agony. When he finally did call, I told him I had gone elsewhere.
Elsewhere was a rheumatologist in Baltimore, referred by another physician from the hospital in northern Virginia with which I affiliate. I told the Baltimore doctor the case was an emergency, because the condition was now making it difficult, and at times impossible, for me to continue my practice. He was so busy he couldn’t fit me in until the middle of December, more than a month away, but that was a lot better than being out of town or not returning my call, so we set a date.
At our first meeting he said he wanted to admit me to the Baltimore hospital for further study, and I agreed to a week in early January 1985. I was reluctant, because it meant taking time off from work at my own hospital and required the rescheduling of a lot of my elderly patients who do not take well to change.
By the time I entered the hospital, the pain in my neck had improved noticeably. My shoulder was worse, and there were new pains in one knee and the opposite hip. The study involved a joint survey with whole-body X rays and a full repeat of all the laboratory tests I had undergone earlier. While I was going through this, I noticed that I was beginning to feel light-headed and slightly dizzy, and all my joints were starting to get unusually warm, which I mentioned to the doctor. He wasn’t surprised; he told me the tests showed my hemoglobin had dropped from my normal of 12 or 13 to 10 grams and the sedimentation rate was up 20 points to 55. He took my temperature rectally and it stayed normal; only my joints were hot. When the tests were completed, I was sent home with three prescriptions: one for prednisone, one for Plaquenil, and one for a nonsteroidal anti-inflammatory. My life as an arthritic had begun in earnest.
In the months that followed, I never had any fear that I would die from the arthritis, but there were many times when I seriously wondered if I would survive the treatment.
My first problem with medication was a rash which developed all over my body within two weeks of leaving the hospital in Baltimore. I called for a return appointment, but the problem with seeing a successful rheumatologist between regular visits is that the patient has to sit for up to five hours in the waiting room surrounded by chronic-looking patients, and each such journey turns into a day-long expedition. Already, I had sacrificed more of my professional time to the treatment than to the disease itself, and the situation was only to get worse in the months ahead. When the doctor finally saw me, he stopped the first nonsteroidal anti-inflammatory and put me on low levels of another one called Feldene.
Over the next few months, my life was reduced to little more than working, eating, and sleeping. I was recently divorced at the time, and a woman cousin who lives nearby in Maryland often helped with my cooking and drove me back and forth to my appointments in Baltimore. I managed to get to work on my own, but there were days when my wrists were so painful and my hands so weak I was unable to hold the steering wheel of my car and was forced to call in sick. Over the next four months, because of the steroids, my weight increased by fifty pounds, up from a normal 170 to a very uncomfortable 220.
That June I went to work one morning, put in a normal day, and at about two in the afternoon I noticed that my hands were becoming so stiff that I had trouble using them. This was an ominous departure from my usual experience, in which all of my inflammation and stiffness had occurred in the morning, and I decided to head home as quickly as possible; something really bad was coming, and I knew if I stayed around any longer I would have to be admitted as a patient. I was not eager to advertise my physical liabilities among my peers as I was afraid it might affect my future at the hospital.
When I got to my locker I was unable to open the door and had to ask an intern for help, but then I decided things were happening too quickly for me to take the time to change and I headed out to the garage. Somehow I opened the door to my car, and as I sat behind the wheel I dropped the keys on the floor. After I finally got them into the ignition lock, it took another twenty minutes to turn them enough to get the engine started. My hands had lost almost all of their strength, especially in the rotational motion of the wrist. Driving home was no problem because the car has an automatic shift and power steering, but once I reached my house I was unable to turn the wheel enough to park in the garage, so I pulled over to the curb on the street. It took another half hour to turn off the key, and that much time again to walk up the path to my front door and into the house. Once inside, I went to the bedroom and called my cousin. “I don’t know what’s happening,” I told her, “but you’d better get right over. I can’t move.”
I badly needed to relieve my bladder, but I knew I’d never make it to the bathroom on my own. I lay back on the bed and waited for my cousin.
By the time she arrived, I had been lying in one position long enough that I couldn’t even turn my head. I asked her to call a good friend of mine, an orthopedic surgeon, to get the name of a rheumatologist whom he had recommended several months earlier. I also called Baltimore and talked to the resident at the hospital where my present rheumatologist practiced. I told him I was suffering a severe arthritic attack and asked what I could do. He told me I could drive to Baltimore, but even if I did there wasn’t much they could do for me because my regular doctor had gone home; the best he could offer was to give me some Demerol. I decided not to go. (Since I’ve been sick with arthritis, I have carefully avoided any of the painkillers like Demerol or morphine because of my fear of becoming addicted; the strongest medication of that kind I ever took was Darvocet-N 100, and in two years I didn’t use a hundred tablets.)
My cousin dialed the rheumatologist my friend had referred me to, in a Maryland suburb of Washington and much nearer to where I lived. He agreed to see me the next day.
The following morning I was better, but not nearly well enough to go to work or to drive to the doctor’s office by myself. My cousin came back at noontime and we drove to the doctor’s in her car.
This time the doctor started me off on aspirin, coated to avoid disturbing my stomach, which by now had become sensitive to almost every form of medication. The doctor tried to take me off the steroids, but every time I stopped taking them I became so stiff and inflamed that he had to start me right up again. He then tried tapering my dosage to a low level of five milligrams every day, but it took five tries and six more months before he was successful in stopping the steroids altogether; during each of those failed attempts, I’d be all right for about a week, and then I’d become so stiff again I couldn’t move.
But what this new rheumatologist was taking away with one hand, he started putting right back with the other. He began a program of injecting cortisone directly into my wrist joints, and a course of treatment with gold salts. The gold was like mustard in both appearance and effects. I don’t know which treatment was more painful. In a short time I noticed that my normally brown hair had started turning red from the gold injections, and I asked him with a certain amount of irony if I were eventually going to become blond. A few days later I received an even more ironical answer when I discovered that the hair on the top of my head had started to fall out.
Besides all that, the gold didn’t work. After five months, the doctor decided to try yet another approach and he switched me over to penicillamine.
The penicillamine was a great relief from the gold for two reasons: it was administered orally and didn’t require the painful injections, and it worked. The arthritis came under control within just a few weeks, and for the next couple of months I felt terrific. Then one morning as I was shaving I felt something odd on my upper lip, somewhat like an insect bite, and as I looked more closely I saw that I was developing a blister. Within a few days it had spread to the inside of my mouth and cracked down the middle both inside and out; then it started to bleed, and pus appeared at the edges of the lesion.
The rheumatologist decided the blister had nothing to do with the treatment and he sent me to a dermatologist. The dermatologist took one look and quickly agreed; he said the blister was more likely related to the arthritis itself, and he gave me a steroid cream to spread over the affected area. By this time I was becoming certain that the real cause was the penicillamine, but when I suggested it a second time, the dermatologist said he would watch it for a while and if it got worse he would do a biopsy—not an answer that encouraged further discussion.
Shortly after the blister appeared, I began to notice new symptoms in my eyes. I had always been highly allergic by nature, reacting to almost everything from dust to feathers to pollen and all the other known irritants, and as a result I was not unused to having my eyes become red and teary. But this was something new; whenever the reaction started, it would come on like a tornado and I would be nearly blinded by the water in my eyes. I wondered whether it might be stress-related, but I dismissed that idea when I considered that my arthritis was better than ever, I was able to do my job well enough, and my life seemed to be relatively stress-free.
I went to see an eye doctor who told me it was probably just an unusual form of allergy. He gave me some drops to put in several times a day. One morning a week later I looked in the bathroom mirror, and what I saw there belonged in a Dracula movie; my eyes were fiery red. The ophthalmologist didn’t have any new ideas and just told me to continue using the drops. But a few days after that I was at work and I ran into an eye surgeon who took one look at me and asked if I had rheumatoid arthritis. When I said I did, he examined my eyes closely and told me that my tear ducts had stopped producing tears, a not-uncommon effect of the disease. He gave me artificial tears, which I applied three times a day.
Meanwhile, I was developing a reaction to the aspirin which the doctor had prescribed in place of the steroids. I experienced dizziness, ringing in my ears, and lightheadedness. The doctor told me to cut down, and after I did I called him back and said I planned to get off the penicillamine as well. I reasoned that if the relatively minor problems with the aspirin were sufficient to cut back, then the far more serious effects of penicillamine were a good argument for quitting altogether.
About two months later I went back for a check-up and found that all the test results had started climbing again. The penicillamine hadn’t changed anything; it had merely masked the effects of the arthritis, and now they were coming back to the surface. The doctor told me he wanted to put me back on the penicillamine. I was scared to death of it but, like him, I couldn’t see any other choice. I took one tablet, and the next day my lips were completely covered with blisters.
It happened that on that same day, I had my weekly appointment with the physical therapist who had been helping me to work with my affected joints. He took one look at me and said, “You know, you really ought to be seeing Dr. Brown at the National Hospital.”
I had never heard of Dr. Brown, and I asked the therapist who he was. He told me about Dr. Brown’s treatment, which he said was sometimes described by others as “unconventional and unproven.” He said that although they had never met, he saw many of Dr. Brown’s patients who were recovering from rheumatoid arthritis, and he was very impressed with the fact that they were all getting better. Without much hope for the results, I called the National Hospital for an appointment and was told Dr. Brown wouldn’t be able to see me for six months. I asked the appointment secretary to put me down for the first opening, in June.
I returned to the doctor who had started me back on the penicillamine, and when he saw the new blisters he immediately switched me over to methotrexate. “This is my last one,” he said. “Let’s hope it works.”
“Let’s,” I said.
I stayed on the methotrexate for four months, but when I saw Dr. Brown I stopped and have been on a simple antibiotic ever since.
Dr. Brown warned me of the Herxheimer effect when I began the tetracycline therapy, and although the effect lasted a month I could feel myself becoming better even within the first week. (The Herxheimer effect, described in Chapters 16 and 18, is a reaction to treatment in which the symptoms of a disease get worse at the start of therapy, a paradoxical sign that the infectious source of a disease is under attack.) It was as though I could actually feel what was happening at the cellular level in my body, that the cause of the arthritis was being attacked and destroyed and carried out of my system, and it was terrific.
I have been in treatment with Dr. Brown for only three months, and I have improved immensely. My hips and knees are now in perfect shape and I can walk briskly for the first time in two years; I have more energy, I can exercise more each day, my damaged hepatic function has improved, my eyes are better, and I am returning to health. The wrist joints in both arms were already damaged by the disease before I reached Dr. Brown, however, and this treatment is not going to increase their limited function. I still have a distance to go, but I feel that I am on the road to full recovery.
I wish I had heard of Dr. Brown’s treatment two years earlier, in time to save me the unnecessary suffering, the expense, and the damage to my career and my body which I have lived through in the interim. And I hope by telling my small part of Dr. Brown’s story, I will help the world to get to know him better and save others from my own all-too-common experience.