Rheumatoid Arthritis

Well, since youre so good at this, why dont you get out there and ski? Not too many years ago, Annette and her husband had been taking their boat to the lake, trying to teach their friend how to water ski, and he just wasnt getting it. They worked with him an entire summer, and into a second summer, and everyone was frustrated. When he challenged her, O.K! was Annettes feisty response, popping out of her mouth almost before she thought about it. Her husband asked her if she was sure and Annette said yes. I wanted to do it, just to prove I could do it. I got out there on the skis and my husband asked me if I was scared. Yeah, Im scared, she told him. The boat started and she popped right up and skied around for a while. Not remarkable, unless you know that twenty-one years ago, when Annette, an RN, BSN, was twenty-one, she began having symptoms of rheumatoid arthritis. I was running three or four times a week and I started having ankle, knee and foot pain when I was running. I told myself it was the concrete I was running on. I was working in ICU, and I joined the softball team, because Id played softball in high school…and I found out I couldnt throw the ball. It took every bit of strength I had and Id just kind of lob it to my team mate. Then, shed zip it right back to me and, when the ball hit my glove, it hurt my hands, my wrist, and my elbow. I asked others on the team if it hurt them to catch the ball, and they said, no. My line drive was dropping half way to the pitchers mound, and my run to first was in slow motion. “I was pretending it was something else, until one of the other nurses I worked with saw that I couldnt bend my index finger, asked if Id seen someone, and wouldnt let it rest until I did, recalls Annette. After an initial round of naprosyn, the inflammation came back in both hands, and blood work confirmed that Annette had rheumatoid arthritis. Youll be in a wheelchair by the time you are 40, her doctor told her. He started her out on 5 mg of prednisone, non-steroidal anti-inflammatory drugs (NSAIDs) and encouraged her to start methotrexate. Im a nurse; I know too much, there was no way I was going to take methotrexate. The doctor said, O.K., well do what we can, but you cant do steroids forever. He suggested I start plaquenil, but I had a history of psoriasis and so plaquenil* was out. Four years later, when Annette and her husband wanted to start a family, she consulted her rheumatologist about going off of the NSAID and she was pregnant almost immediately. About six weeks after her babys delivery, Annettes arthritis returned and her health crashed. The pain and swelling was debilitating and she had an infant to care for. Pulling the tabs on a diaper was like an electric shock through her hands, wrists and elbows. Her knees were swollen; two to three times their normal size. She couldnt lift her arms to hold a comb, much less to comb her hair. She found out that anyone on low dose, long term steroids, like prednisone, needs a stress dose I.V. steroid with any stress (like nine months of pregnancy and seventeen hours of labor and delivery!). Her rheumatologist had omitted those post-partum orders. Annette was in an adrenal crisis. This is such a critical health problem that most people do not live through such an event. It took her eighteen months of rehabilitation to begin to vaguely resemble the person she had been. It was her mother-in-laws friend, an emergency room doctor, who gently lent Annette a copy of The New Arthritis Breakthrough, by Henry Scammell, with the caveat that she wanted it back. Annette read it and so did her husband. Her husband, who she says is The Researcher, & insisted I read the book and look for a doctor who could treat me. In 1999, she was under new pressure from her rheumatologist to take Methotrexate. This time she tried it and she says, I felt great for two or three days, and then I felt worse. He said we just needed to up the dose and then I felt great for two or three days, after which I felt worse. Every time, his answer was to up the dose. So, I left him and began looking for an Antibiotic Protocol doctor. From what we had read, I wanted to start with the IV, but once I was on the tablet, I felt immediate improvement. I was really excited about that, but I wanted more relief. I was looking for a doctor that I didnt have to coach through the Antibiotic Protocol. I contacted the Road Back Foundation and I went to an experienced AP physician who had worked with Dr. Thomas McPherson Brown at Johns Hopkins. This physician was brilliant. He did the blood work, prescribed IV antibiotics and I was excited. He said I needed one IV a day for five days, every six months and felt I wouldnt ever need more than that. I did a total of six IV treatments between 2002 and 2006. My AP physician was right, that was all I needed; Im doing great. Since 2008, Annette found a local doctor who has been treating lung patients with antibiotics because he believes their disease is caused by mycoplasma infections. He is very knowledgeable about Antibiotic Protocol and she has been on a maintenance dose variously of a penicillin derivative, minocin and erythromycin over the past three years. Presently, she is taking 100 mg of minocin once a day, acidophilus once a day and garlic, which she believes is keeping yeast infections at bay. In addition, she takes glucosamine and chondroitin, and the NSAID, ketoprofen, 200 mg once a day. Annette says, I have observed that different NSAIDs work for different people. I am taking ketoprofen and that is a very old NSAID. After trying others, I found this is the one that works for me. I have to be careful where I purchase it, because its availability is tough. Sometimes the pharmacy tries to substitute and its doesnt work. I did try naproxen, but it bothered my stomach and with voltaren we had to adjust it along the way. So, now, when my doctor tries to get me to try some of the new NSAIDs, I say no. If it isnt broken, why mess with it – this is what works for me. Work was a nightmare. It was all I could do to get to my part-time job, barely make it through the day and then crash on the couch, afraid to move when I got home. The pain and fatigue were overwhelming. Now, I have the ability to work and carry on home life with one active husband and two very active teenagers! Recently, I started a second part-time job. I also sit on a church board, coordinate nursing care for a week of summer camp for one-hundred and fifty 3rd through 12th graders and coach Jr. Bible quizzing during the school year. Family life means there is a lot of running and not a lot of time to crash on the couch after work, but Im not complaining! My girls are a great help with household chores, but I still scrub the bathrooms and the kitchen floor, do laundry and clean. Annette doesnt downhill, cross country, or water ski anymore, but sledding is very high on her list of activities, especially with all of the snow theyve had this winter in Ohio. Now 42, she points out that she is not close to being in a wheelchair. I am not normal, Annette says. The prednisone weakened her immune system. She has had a left shoulder replacement, because the ball in her shoulder disintegrated. If someone asks me if Im normal I have to say, No, Im not, but my pain is manageable. I can carry on my day. I can function. As a nurse, I am touched by many patients who have RA. They realize my diagnosis usually because of my hands. They are able to see me moving around the gym (I work in outpatient cardiac and pulmonary rehab) and often ask how I am doing so well. This sparks conversation about AP. I am able to be a reference person for many patients and also talk to people by e-mail from the rheumatic.org site. Friends and neighbors often refer their friends and neighbors to me. I encourage anyone I speak to about AP to educate themselves before approaching their doctor with this option. It is so important to know how and why AP works. Your doctor is NOT being stubborn or difficult when he questions AP. He is just not familiar with it. It is not what he has been taught to believe to be true. His interest level in AP depends on your knowledge of the topic. Believe me when I say you have a lot more at stake than he does when it comes to choosing what therapy is right for you! I took a look at what my rheumatologist could offer me and the best they could offer was slowing the process down — thats the best that modern medicine can give  with unacceptable side effects. Now, if you can slow down the progression of rheumatoid arthritis with little or no side effects … which are you going to choose?