I want to blog about arthritis for three reasons. 1. Its therapeutic to write about what’s going on with me. 2. To communicate with my friends and family. 3. Bring awareness to autoimmune arthritis.
In May 2004, I started having severe eye pain, redness, and blurred vision. I ended up at an ophthalmologist and within 1 minute he pronounced that both eyes had acute anterior iritis – an inflammation of the iris. After performing some tests and prescribing continuous doses of prednisone steroid, he asked me if I ever had joint problems. I thought that this was odd coming from a physician dedicated to treating eye problems. He stated that iritis is a common symptom in autoimmune disorders. He said that there are blood tests but since I had no other symptoms, I could just wait and see what happens. I quickly forgot all about it.
In the fall of 2006, I began to have problems with my Achilles tendons. They were swollen, inflamed, and very painful to the touch. The left tendon was worse than the right. It affected my ability to exercise. After visiting an orthopedic surgeon who specializes in ankles, he suspected that there was tendonitis and/or tearing in the tendon. Upon examination, he stated that the problem was likely congenital because I have long leg bones causing the tendon to stretch. An MRI of the tendon revealed tears in the tendon. Surgery on the left tendon was performed in January 2007. He repaired the torn section and also performed a lengthening of the tendon in order to reduce the tension. I mentioned that the right tendon was also hurting and the doctor indicated that we should just keep an eye on it while the other one healed from the surgery. I was hiking by the summer of 2007 and snow skiing that next winter. However, by that time, my right tendon was bothering me enough so I headed back to the orthopedic surgeon. A MRI revealed tearing and the same surgery was performed on the right leg in April 2008. I recovered and was back to snow skiing by December 2008. Never the less, my legs never felt the same way before the surgery.
Putting it all Together
In January of 2009, I began to experience pain in the middle joints of my fingers on both hands. This was accompanied by morning stiffness and a lot of fatigue. I also had chronic hives, usually in the evenings, on my arms and legs. I visited my regular doctor and told him of my symptoms. After describing my history with the eye problems and Achilles tendon tearing, he began to suspect that I had an autoimmune disease – like rheumatoid arthritis (RA). One clue is that symptoms presented symmetrically on both sides of the body…iritis in both eyes, Achilles tendon problems on both sides, etc. He mentioned that fatigue is also a common symptom. He referred me to a rheumatologist – a specialist in arthritis and associated diseases.
After completing a long medical history survey, multiple office visits, numerous blood tests, and hand x-rays, the rheumatologist said that I have some sort of autoimmune arthritis. My blood tests were negative for rheumatoid arthritis factor (about 20-30% of people are negative but have the symptoms). But the bottom line is that this is a clinical diagnosis based on symptoms. There is no single blood test. He initially called it seronegative arthritis or spondylarthropathy. Some call it seronegative rheumatoid arthritis. Sometimes, blood tests convert to positive over time. Doesn’t matter to me – I knew I felt bad.
Autoimmune means that your body’s own immune system is attacking itself. There is no known reason why this happens. Similar autoimmune diseases include ankylosing spondylitis, psoriasis, Crohns disease, and lupus. Autoimmune arthritis differs from the more common osteoarthritis in that its cause is immunological, not trauma induced. Most people will have some osteoarthritis by the time they are in their 60s. Autoimmune arthritis affects millions of Americans and can start anywhere from the 20s-50s.
Since x-rays of my fingers revealed the start of bone erosion, the doctor started me on a medicine called sulfasalazine which was supposed to reduce inflammation. I had a terrible allergic reaction so that got halted and I was put on methotrexate. This is an immunosuppressant drug that is supposed to slow the progression of joint damage. After three weeks on that drug, my body clearly told me it didn’t like it…constant nausea, headache, feeing like a truck ran over me, etc. So, off to the doctor I went again. By this time, joint pain had extended to the base of my fingers, both wrists, both elbows, and my knees. My ankles were always hurting since before the surgeries. At times, I could not lift heavy objects and even climbing the stairs was laborious. My joints popped and cracked when moved. I was stiff most of the day and the fatigue was worsening. The fatigue is the hardest part for people to understand. I describe it like having the flu. I was prescribed prednisone steroids to check the inflammation. This is fine for a short period of time but not long term.
The doctor finally put me on a “biological” drug called Enbrel. It’s a protein designed to attach itself to inflammation-causing chemicals released by white blood cells in the joints. It must be self-injected once a week – it doesn’t hurt too much. The drug is made via a recombinant DNA process where an engineered human gene designed to produce the protein is grown and harvested. The retail cost is $1,800 a month! Thank God for insurance coverage and a $25 co-pay!
At this point, I slowed down on work, church, and other activities in an effort to rest and give some time for the Enbrel to work. After about 2 weeks, today is the first day that I didn’t wake up too terribly stiff and I actually had energy the entire day – didn’t even take a nap! I’m hoping this is a sign that Enbrel is starting to work – it usually starts working in a couple of weeks with full impact over a few months. But time will tell. Enbrel and related drugs suppress the immune system so I have to stay vigilant for infections. There is no cure for arthritis. But people successfully receiving treatment go on to live normal lives. My goal is to snow ski again next winter!
Some of the hardest parts of dealing with this are the drawn out processes of diagnosing, figuring out treatments, and explaining to people what’s going on. And you never know what’s around the corner. Flares can come and go. But through all of it, I’ve come to rely on God, family and friends. I have hope for the future. I have hope that medical treatments will work. I have hope that God will heal me. There is no big celebrity carrying the flag for arthritis. There is no special ribbon to be worn (maybe a DNA-shaped helix ribbon would work!). But I hope everyone reading this will be more aware of the issues. Ask questions. And above all, pray for me.