I was diagnosed with rheumatoid arthritis in early 1971, during the second semester of my freshman year at LSU in Baton Rouge, Louisiana. I woke up early one morning because my wrist hurt so much that I could not sleep. I went to the university clinic and was given a splint for my wrist and some Darvon for the pain. My wrist hurt for several days then stopped, but a week or so later my other wrist started hurting and then the pain moved to my ankle. This pattern of the pain moving from joint to joint continued, so I went back to the clinic and the doctor told me that he thought I had rheumatoid arthritis. He ran some blood tests which confirmed his diagnosis.
I had no idea at the time what having RA meant. My parents were, of course, very concerned so I went home to Houston to see a rheumatologist. I was shocked to see that everyone in the waiting room was OLD! Some were using canes and others were in wheelchairs. My first doctor gave me monthly cortisone injections and told me to take 16-20 aspirin a day. After several months my parents decided he was not the doctor for me and they sent me to a new rheumatologist who started me on gold shots and NSAIDs. By then, I was in constant pain; all of my joints were affected and the meds just kept it somewhat manageable. My roommate would have to get up in the morning to open our door as my wrist hurt too much for me to do it. I was not required to take any early morning classes (as most freshmen were) and I was given a sticker for my car that allowed me to park in the faculty parking lots. My mother sent me all kinds of vitamins, a blender and the ingredients to make Adele Daviss pep-up nutritional drink, but we used it to make strawberry daiquiris instead! Even though I was in constant pain, I loved the four years I spent at LSU.
After I graduated in 1974, I went to work for Dresser Industries. I had a wonderful boss who understood my limitations and would allow me to come to work late since mornings were so difficult for me. I met my husband at work in 1978 and within a year we were married and I became the instant stay at home mom of two teenage boys! By then, I was developing deformities in my hands and feet and had limited mobility in my shoulders, elbows and wrists. My doctor decided it was time to change my medications, so he started me on Penicillamine and occasional short courses of Prednisone. We moved to Venezuela in 1985 when our first son was one and our second son was born there one year later. After each of my sons was born I had terrible flares but was able to manage the pain with acupuncture (much to my doctors dismay).
In 1988, I had just started taking Methotrexate, when my mother saw Dr. McPherson Brown on Good Morning America talking about The Road Back , his book on antibiotic therapy as a treatment for RA. She bought the book and sent it to me in Venezuela and after reading it I called to make an appointment at his clinic in Arlington, Virginia. By then, Dr. Brown had retired and one of his former colleagues had taken over his practice. Although I was disappointed that they could not fit me in for 9 months, I went ahead and made the appointment. I was told that I needed to make arrangements to stay in Arlington for the week as I would be getting an infusion of Clindamycin every day for 5 days. After my appointment and all the lab work, I was taken off Methotrexate and started on Tetracycline, NSAIDs and monthly infusions of Clindamycin that I would get in the ER at the hospital in Venezuela! I did not have a particularly severe Jarisch-Herxheimer reaction, but it took 10-11 months before I started to feel better. I quit laying down in my bed every time I passed it, I felt my depression lifting (although I did not think I was depressed at the time), I did not have as much early morning stiffness and my flares became more infrequent.
I went to Dr. Browns clinic for a twice a year, five day appointment for about 7 years, but when my doctor retired and I could not develop a rapport with their new doctor, I called The Road Back Foundation for help. I was living in Houston by then so they gave me the name of a local doctor who was familiar with the antibiotic protocol and was happy to continue with my treatment plan. I am currently on Minocycline 3x a week, IV Clindamycin once a month and Celebrex when I need it. I do not have any early morning stiffness, any pain to speak of (only if I stand or walk for too long) and I have not had a flare in 6-7 years. I did develop osteoporosis 10 years ago because of the steroids I took, but my last 4 Dexa X-rays have been normal due to my weekly Fosamax prescription. By the time I started on antibiotic therapy, I had had RA for 20 years and had significant deterioration in my joints, particularly my knees, hands and feet. Consequently, I have had joint replacements in both knees, all my fingers and a realignment of the bones in all my toes (this was particularly painful). I only have about a 10-20 degree range of motion in my arms at the elbow and I cannot lift my arms above shoulder level. Needless to say, it is very difficult to reach into cabinets or above my head. I am considering having elbow replacement surgery as I understand it would increase my range of motion significantly.
When Humira and Enbrel first came out, everyone I knew wanted to know why I wasnt taking any of these wonderful new drugs. I finally asked my doctor if she thought I should give them a try as she continues to practice traditional rheumatology with the vast majority of her patients. She looked at me as if I had lost my mind! She finally asked me why on earth would I want to do that, when the antibiotic therapy worked so well for me. Needless to say, that was the last conversation we had about that! Even with my limitations, difficult surgeries and more difficult rehabilitations, I am much better now than I ever was taking traditional drugs for the treatment of RA.
On a personal note, I painted quite a bit when I was young but stopped after my diagnosis of RA. I was inspired to start painting again in 2004 when I received a beautiful photograph of our two oldest grandchildren sitting in a park with a profusion of flowers behind them. The fact that I had never painted a portrait didnt really bother me; I felt sure I could do it but knew I would do a better job if I had some guidance. It did not take me long to find a wonderful teacher and have been taking lessons from her off and on ever since. I did finish that portrait and several others and have continued painting both landscapes and florals and an occasional commissioned portrait. I find that the actual mechanics of painting is more awkward and difficult for me now and I am uncomfortable having anyone watch me (even my teacher)! I have a tendency to paint for long periods once I get started, even though I tire more easily and my shoulder will start to ache. It has been truly wonderful to rediscover my love of painting and a surprise to find that even with my physical limitations, I am better at it that I was 35 years ago!