My story began Nov. 10, 2003. I had a terrible sore throat. I called in sick and went to an urgent care facility. The rapid strep test came back negative, but the Dr. said, “These are only 85% accurate and I see that your tonsils are indeed infected.” She prescribed antibiotics and told me to take them until they were gone-10 days. I was surprised that after 3 days I barely felt better, but by the sixth day I was fine. My husband indicated that his throat was sore, so I gave him my pills as I thought I was better. Big mistake. A couple of weeks later I had hives on my trunk and limbs. They lasted weeks. (Later I read this was a symptom of an immune system response).
Dec. 9 my ankle hurt so much in the middle of the night I couldn’t talk through the pain. I stayed home all day and put it up. There was no swelling, but the pain was very obviously in a tendon under my inner ankle. I couldn’t even touch it. It improved over the next couple of days. In the next week I noticed that my shoulder hurt for a couple of days, and a couple of fingers were sore in the morning for 2 days. Never was there any stiffness, it always felt very ‘soft tissue’. The next Tuesday my wrist was sore in the morning so that I didn’t want to use scissors. By 3:00 I couldn’t write my name. The next day I could only sit on the couch with my hand on a pillow. Even air from the ceiling fan hurt. Walking jarred my wrist too much. As the day wore on I noticed a tendon pop up along the top of my wrist and my whole hand swelled. My brother is a doctor. When he called he asked immediately, “When did you have strep throat and a rash?” He told me it was likely a reactive arthritis from an unresolved strep. X rays revealed no injury. Blood tests showed elevated inflammation markers, including Rh factor. I went to a rheumatologist who ran all the tests again and put me back on antibiotics due to elevated strep titers indicating that this would resolve itself in a few weeks. Things did improve and I thought I was cured. Then it all started again. My rheum wanted to diagnose possible RA, but wouldn’t until things got worse. He said, “You know, you are getting older, you can expect aches and pains.” This was absurd to me. Not 3 months earlier I was lifting weights and swimming laps 4 times a week. Now I could barely dress myself. How could I age that much in a few months? The pain always began in the evening, and lasted 48 hours, then moved to a new area. Never was there stiffness and it was never symmetrical. It hit everywhere, knee, hip, shoulder, elbow, etc. Often I saw the tendon pop up. I went on several courses of prednisone. It was the only thing that helped. I saw 3 more rheumatologists. I had severe chills,fever, nausea and vomiting every 8 weeks, almost to the day. I had an MRI on my shoulder. My primary care Dr. and my brother continued to indicate it must be the strep. Strep antibodies remained elevated.I was tested for lupus 7 times and had 8 negative lyme disease tests. July 4th I had the worst sore throat of my life. My inner arms were covered with pink circles. This was erythema marginatum, the rash that goes with rheumatic fever. Already on E mycine daily for the last month, my throat culture was positive. I went on zithromax. I saw an ENT 10 days later. I had a positive strep, still. I went on penicillin. A cancer antigen test came back slightly elevated. An ultrasound and cat scan both indicated something on the ovary. Apparently an unusual symptom of cancer can be joint pain. My gyno felt it was only fibroids, saying, “I’m 90% sure. Is that enough to bet your life on?” August 2004 I had a hysterectomy. The morphine drip after surgery did not touch the joint pain. I hurt in 6-7 places now-like someone had hit me with a bat. My arms/shoulders and 2nd toe on the right were excruciating. Four weeks later I had a tonsillectomy.The Dr. indicated that the tonsils fell apart when removed. I could barely walk into the hospital. I felt better the next day. I was painfree in a couple of days. The rash faded over a couple of weeks. Two months later, it all came back, hard. My primary care Dr. was at his wits end. He gave me a script for doxycycline saying, “This helps some people with RA.” Everything got terribly worse in the next few weeks.My brother referred me to a Rheum in Tucson. It was Nov. 2004. She listened to all of my information, looked at all of my blood tests, etc. and diagnosed post strep reactive arthritis. The toe pain is a big indicator of reactive arth.This is not a common disease, but not rare. It is self limiting, lasting 2-6 weeks, rarely up to a year. Apparently strep byproducts continue to float around in the blood stream and the immune system reacts to them attacking cells with similar proteins-tendon sheaths and hear muscle-as in rheumatic fever. She left me on the doxy and prescribed sulfasalazine also. VERY slowing, over the next few months, things improved. All blood tests were normal by May 2005 and I felt perfect, other than a little soreness in my shoulder. She felt the sulfasalazine was doing the trick. In order to give blood I went off the doxy. My foot/toe became sore in a few days. The next week my neck was terribly painful and my foot was hot and swollen. My strep titers were at 1480, (normal is 85). I went back on the doxy. It took 8 weeks for things to settle down again. In Oct. 2006 I began taking iron. The pain began again.Strep titers were at 680. It went on for a month. I could not figure out what had changed. I stopped all the vitamins and it all shut down again. Apparently, the doxy bonds to the iron and doesn’t absorb. I still can have slight flare every 3-6 months, but I take prednisone for a couple of days and it’s fine. My Dr. believes I encounter some virus or strain of strep that revs my immune system up again. It’s July 2007 and I am lifting weights and swimming again. My rheum. indicates that I am on the safest meds I can be on. I do blood tests every 8 weeks. Inflammation markers are normal, strep antibodies are always a little high.Ironically, my cousin in New York had rheumatic fever 6 months into my nightmare. He still suffers from pain. My other cousin in Pennsylvania had it as a child. I will never give up my doxycycline. I tell everyone I know who has a loved one with RA.