My name is Walt and my RA story began in the early spring of 1998 at Trapper’s Lake Lodge above Meeker, Colorado where my wife and I were helping her brother, Tim, renovate the lodge and cabins. Tim asked me to help bring several rental rowboats across Trapper’s Lake from a campground on the other side of the lake, a distance of about a half mile. I agreed, so Tim dropped another friend and I off at the campground and we each took a rowboat with two other boats tied behind onto the lake. After rowing for about a half an hour, the wind picked up and a snow squall covered us with wet snow. We finally made it to the lodge dock and back to the lodge looking like half frozen snowmen. My left thumb started to swell and I thought I had sprained it. By the next morning I could not move my thumb and my whole hand ached. Two of the guests at the lodge were surgeons and examined my hand. Their diagnosis was that I had stressed the joints in my hand to a point that they were inflamed causing the swelling. My hand and thumb bothered me all summer. By the next fall the swelling was gone but the joints in my hand had begun to swell and the pain was a constant thing. A routine annual visit to my cardiologist ( I had a stent in 1996) resulted in his suggestion that I see a rheumatologist at Rose Hospital in Denver. The young doctor, Karen Komenski, was very serious and apologetic when she told my wife and I that her diagnosis was rheumatoid arthritis. We both had big smiles on our faces that we couldn’t contain as we had received word from our real estate agent in Hawaii (where Marka’s folks lived and where we had visited them every other year for ten years) just that afternoon that our bid for a condo on the North Shore of Oahu had been accepted and that we would be leaving for Hawaii shortly to close on the deal. Our reaction to the news was a shock to the young doctor. After I explained our non-reaction to her news as well as the fact that I suspected that I had RA before her diagnosis, she outlined a course of treatment and prescribed sulfasalazine 500mg twice a day for starters. I followed this regimen for about a year until Dr. Komenski left to work for NIH on the east coast.
I then became a patient of Dr. Vance Bray at the Arthritis Clinic of Colorado. My RA was getting progressively worse with both hands swollen, covered with nodules and little strength left in either hand. I began to suffer flairs about twice a month in my shoulders and a debilitating flair in my left foot after a long walk around Waikiki. Research on the internet led me to the Road Back website and I read all of the postings. Upon our return to Colorado in 2000, I went to my rheumatologist, Dr. Bray, and asked him about trying minocycline. We talked about it at length and he said that it couldn’t hurt and wrote my initial prescription for 100mg twice a day. He cautioned me that results were unpredictable and not to be disappointed if it did not work.
I started taking 100mg each morning and evening along with the sulfasalazine for three months before dropping the sulfasalazine and within six months my nodules were gone as well as most of the joint swelling! During this time period I waited for the Jarisch-Herxheimer response, the apparent worsening of symptoms which can seem like a flare but that is actually caused by the body’s inflammatory response to cell die-off. My reaction to the antibiotic therapy was very subdued and I did not notice any severe increase or decrease in my symptoms. Although I had some rough periods with pain in both shoulders making it impossible to sleep without heavy duty pain medication, I could tell that things were improving. Any overexertion on my part would still bring on a flair (usually localized to a shoulder or hand) that would subside in a couple of days. After about a year on 200mg daily, I was down to a single flair a month but noticed black patches on my legs. My dermatologist told me to cut back on the minocycline as I was becoming extremely sun sensitive. I cut back to 100mg daily without any ill effects although I still am sun sensitive. Using a spray sunblock seems to be the most effective means to prevent further skin discoloration. For the past ten years, I have taken 100mg daily without any other side effects and without interaction with my heart medication (my cardiologist my minocycline prescription annually). I still get a flair once in a while when I do something foolish like swinging a hammer all day or climbing up and down our hill cutting wood! Ive learned to slow down and smell the roses. Without the work of the Road Back Foundation and this website, I am sure I would have never read about the work of Dr. Brown and antibiotic therapy. Thank you, thank you, thank you!