My encounter with scleroderma began in November of 1989, when I was 27. I was looking for parts in an auto salvage lot one day, when I punctured my right wrist on a copper packing staple. Within a day the tissue had swelled and hardened; the joint hurt, but it never showed evidence of infection. I showed my wrist to two friends who were physicians, but both were mystified by the peculiar swelling and hardness. My wrist improved somewhat during the ensuing weeks, but did not return to normal. In late December, I noticed that my arm and leg muscles stiffened whenever I sat still for awhile, and they would ache as if from great exertion as soon as I stirred. In January, my lower legs began to swell with pitting edema each day, so I resolved to get medical attention. By the time I saw a doctor in February, the fingers of my right hand were beginning to lose range of motion, some circulation problems were appearing, and muscular pain and fatigue had increased. A week later, blood test results in his hand, the doctor gave me a preliminary diagnosis of 'scleroderma'. I had never heard that word before. I asked if that was serious, and he warned me, sympathetically, that it was quite serious. He did not elaborate further, but referred me to the rheumatology department. Nevertheless, I was not very concerned -- I had never had anything terribly serious, and didn't intend to. I went on to my pizza- delivery job that day, blissfully ignorant.
In March, I saw a rheumatologist at a major hospital who had worked in scleroderma research. By that time, the fingers on both hands had developed a pronounced curl, the edema had grown quite severe, and my toes and ankles were much less mobile. Both forearms and hands had swelled too. The doctor wanted to wait a bit before confirming the diagnosis, so he prescribed prednisone and asked me to return in May. (I took the prednisone for about two weeks, 5 mg per day).
By May of 1990, only six months since the curious swelling in my wrist, all my extremities had become involved and new problems appeared weekly. The discomfort of sitting in a chair (owing to weak circulation) became unbearable after twenty minutes, by which time my leg muscles would become so stiff that I had to rise slowly and take a few painful warm-up steps before I could go anywhere. The skin on my forearms and lower legs became so tight and shiny, they looked oiled or polished. My hands and arms became hypersensitive to impact, so I held them carefully to avoid casually bumping them into anything. I could scarcely run, I had to be very careful on stairs to avoid falling, and I could not work on my car because it was too difficult to get down on the ground and impossible to crawl. Muscular fatigue grew so severe at one point that I could not walk more than 100 yards without stopping to rest my legs. (Fortunately, that stage didn't last.) A day's work wore me out, and many ordinary activities became very difficult or impossible as my hands and legs became more immobilized.
When I saw the rheumatologist in May, he unhesitatingly confirmed the diagnosis of scleroderma; he warned that I have the diffuse form of scleroderma, and that it was progressing very rapidly. At our post- examination conference, he offered four modes of treatment: methotrexate, d- penicillimine, photopheresis, or nothing at all. Of the first two modes he said, in so many words, that they may or may not have any effect, and that if they have any effect it might not be evident for up to two years, and that regular monitoring would be necessary to avoid the kidney damage so often caused as a side effect. Of photopheresis, he said it was too new a treatment to predict the outcome. The fourth mode, no treatment at all, was easily the most appealing of the four. Hearing this depressing array of options, my mother, who had joined me in this conference with the doctor, left the room in tears. Nevertheless, I was not discouraged because we knew of an alternative not offered by the doctor.
A family friend whom we had known for years told us that she too had scleroderma, and she was very excited by the progress she had experienced under the treatment of a pioneering rheumatologist named Dr. Thomas Brown. His treatment uses regular doses of antibiotics applied for a period of years. This treatment is inexpensive, safer than methotrexate or the others, and surprisingly effective in not only halting but often reversing some of the ravages of arthritis and scleroderma in many cases. I probably owe her my life.
I contacted the Huntsville Alabama (my home town) "Dr. Brown Club"; their officers supplied a wealth of information about antibiotic treatment for connective tissue diseases, including a list of doctors who would use it.
Meanwhile, as spring ground into summer, I continued to worsen. I had lost considerable mobility in my hands, wrists, fingers, toes, ankles, knees, shoulders and elbows. My hands could neither close nor fully open, my toes and ankles scarcely moved at all, my knees only bent about halfway; my forearms could rotate only a few degrees, and my elbows would not straighten. My forearms and lower legs had hardened such that when one friend of mine squeezed my forearm he said it felt "stuffed" [by a taxidermist]. I awakened daily with the tell-tale tingling of Raynaud's phenomenon in my hands. I had to lunge at my feet just to put on my shoes and socks, and merely to pick something up off the floor became a significant undertaking. In late May, a stabbing pain beneath my right shoulder blade awoke me at night, once or twice a week at first, increasing to once or twice a night by the end of June. Even my jaw tightened up, so I could not open my mouth fully. In July, a dunk in the cold Ocoee river turned my hands quite blue despite the over 80-degree ambient temperature. I felt as if my whole body was being stuffed with cotton, little by little each day, choking and immobilizing me from the extremities toward the center. Meanwhile, I was too tired to do much more than work, eat, and rest.
In July of 1990, I saw a doctor in Tennessee who was on the list from the "Doctor Brown Club." The Doctor was not overly enthusiastic about antibiotic therapy, but he was willing to prescribe it if I was "sure I wanted it." He prescribed a five- week course of doxycycline and suggested we would repeat it in six months if needed. I did not particularly improve, but the previously advancing symptoms seemed to stabilize in mid-July. Dissatisfied with this course, I saw another Tennessee physician from the list in August. In contrast to the first doctor, he was quite enthusiastic about the results he had seen in his RA patients who were using antibiotics. For me, he prescribed oral tetracycline plus semi-weekly intravenous doses of another antibiotic (I don't remember what it was.) Unfortunately, I had to drive over 120 miles each way to get to his office for the intravenous doses, for three or four days in a row every other week. Almost immediately, the nightly pains in my shoulders stopped, my jaw loosened, and the swelling in my legs went down a little. Around September 1990, my mother (who had made quite a hobby of dealing with my illness) decided we should go straight to the "source," but Dr. Brown had retired and had passed away. Instead, I made an appointment at the Arthritis Clinic of Northern Virginia to see Dr. Brown's former partner (also a rheumatologist, who was treating Dr. Brown's former patients).
My new rheumatologist concurred with the diagnosis of scleroderma, but he was not an exponent of Dr. Brown's protocol. Nevertheless, he was willing to accommodate, so I began taking daily tetracycline and ampicillin (250mg.) plus 1200mg. of intravenous clindamycin every other week. Arranging the intravenous doses was difficult, so I didn't start on them until December or January of 1991, but I have continued them ever since. Nevertheless, I felt improvements right along, but the tetracycline was discontinued when blood tests revealed possible liver problems. I also applied the advice of a scleroderma patient in a book entitled "Holiday From Death" and traded the junk food in my diet for more fruits and fresh vegetable juices.
Progress became noticeable in fall of 1990, while I was still only taking oral antibiotics. The symptoms were much slower to leave than they had been to arrive, but from the fall to the spring, I improved quite a bit. By May or June of 1991, my feet had loosened enough that I could "pop" the joints of my toes, and my hands could do the same three months later. Around the fall of 1991, the strange sheen on my arms and legs disappeared, the skin loosened, and the once-prominent veins on my arms reappeared. The pain and hypersensitivity slowly disappeared. I could bound up and down the stairs again without fear of falling. My anger and frustration went away.
My rheumatologist saw me for the second time in July of 1991, and he was delighted with my progress. Indeed his whole attitude toward antibiotic therapy had become much more enthusiastic.
In late winter of 1992, I enrolled in a karate class and found that with effort and some discomfort, I could form my hands into fists for the first time in two years. Kneeling for the ceremonial bowing-in before and after class was agonizing for my legs and feet, but by the end of summer, I could kneel stiffly but without tremendous discomfort.
In the spring of 1992 I paid a surprise visit to the rheumatologist who had confirmed my diagnosis in May of 1990. I was visiting a family member in the same hospital where the doctor worked, so I looked to find him during his rounds. I found him and a group of colleagues (perhaps they were interns) awaiting an elevator in the hallway. When he had last seen me, my symptoms were very evident and I was worsening rapidly. On that day, however, he almost didn't recognized me, because my hands were clearly not the hands of a person with scleroderma. He and the others huddled about me for a few minutes, asking about my treatment and apparently quite astonished at my condition. They observed the mobility of my wrist, and pinched the skin on the back of my hand to confirm that it was loose. The doctor was delighted on my behalf to find me doing so well. Then their elevator arrived, so they all hustled aboard. I like to think that my case provoked quite a conversation among them, or at least quite a lot of thought.
On the occasion of my third visit to my rheumatologist in September, 1992, he noted that my blood-tests had returned to normal range in all but one of the tests that indicate scleroderma. He wrote in my records, "His improvement is so much that a casual observer would not notice anything at all the matter."
By fall of 1992, I could lead a mostly normal life. Some symptoms remained, however. My lower legs remained somewhat swollen (I could make pits all up and down my shin), my forearms were still a bit hard, and I had yet to regain full mobility of my elbows, wrists and fingers (they curled, but would not straighten). Also, I felt that I lacked the strength and endurance I should expect at my age. Nevertheless, I was learning karate, and went mountain-bike riding once every week or two. I was quite as active as I wanted to be.
Over the last four years, I have made continual if marginal improvement. I do not feel the least tightness in my formerly immobile legs or feet, and the edema has almost disappeared along the way. The skin on my arms and legs looks perfectly normal, which is a stunning improvement over the hard shiny swollen appearance of 1990 and 1991. I seem to have full mobility in every joint except my fingers, which still curl when I raise my wrists; despite this, my fingers have improved enough that I can curl them backward slightly when my wrists are straight. I do not like to admit it, but I still occasionally feel the tingling of Raynaud's phenomenon. I cannot shoot a basketball properly because of my fingers, and I do not much care for volleyball because it pounds my hands and arms too much, but I can do most of what I want to do. My hands have not turned blue in years, despite the fact that my job at the Tennessee Department of Environment and Conservation has me outdoors regularly regardless of the temperature (of course, I wear a good coat and always wear mittens). Even the peculiar hardness that my right wrist developed in November of 1989 has loosened enough that it almost feels normal. I stated above that in 1992, I looked normal to the "casual observer," but now, one would be very observant indeed to spot any difference between me and anyone else of perfect health.
I have seen my rheumatologist annually since the summer of 1990, and my blood test results (ANA, Sed Rate, etc.) improved consistently until they reached the normal range in all scleroderma-related aspects back in the summer of '95 (or was it '94? I forget). Now my doctor has been 'weaning' me off antibiotics bit by bit. I stopped taking intravenous doses of clindamycin in 1992, and I stopped the daily doses of ampicillin in September of '95. Since then, I have taken three 150 mg doses of Clindamycin three times per day for three days every three weeks, on average. Sometimes, I have gotten lazy or run out, and not taken them for several weeks in a row; in fact, I have taken nothing at all since August (about five months).
I know that this disease is considered incurable, so I suppose I'll have it for life. On the other hand, with normal blood-tests, waning symptoms, and a foreseeable termination of medication, I could be as cured as I care to be.
Academy-Award speech section: I thank God for getting me out of this whole ordeal alive despite my rotten attitude, and the many friends and family whose prayers on my behalf were so powerfully answered. I would like to express special thanks to my mother, whose aggressive efforts toward finding treatments and cures are largely responsible for the fact that I am alive and well today. Also, I want to thank my Dad for all his help and for his sound advice.
Craig A.E. Smith, Knoxville, TN 865-602-2569 call evenings until 10:30 EST
You can reach me at firstname.lastname@example.org
Medical History: My copies of these records are not entirely complete.
VANDERBILT UNIVERSITY MEDICAL CENTER, February 20, 1990
ANA Titer: 1:160 Westergren Sed Rate: 3 mm/hr
UNIVERSITY OF ALABAMA BIRMINGHAM HOSPITAL, 3/9/90 ANA Titer 1:1280 homogeneous
THE ARTHRITIS CLINIC OF NORTHERN VIRGINIA (American Medical Laboratories, Inc.) From August 1990, the only record I have is: Sed Rate 40
June 1991: ANA Titer 1:1280 homogeneous Sed Rate 25
September 11, 1992 ANA Titer 1:80 homogenous Sed Rate 15