Mary’s RA Journal
I was diagnosed with RA eight years ago. The onset seemed sudden. But was it? My RA started in my feet. I was one of the 20% whose symptoms started in their feet. My internist thought I was too old to have RA. He seemed to think my feet were fine. As recent as eight years ago, rheumatologists did not routinely examine a patient’s feet. They believed RA started in the small joints of the hands. Examining the feet was inconvenient. Examining the feet took too much time.
My symptoms increased. My pain became severe. I was very sick. As a victim of an unresponsive healthcare system, I finally sought relief in the ER. I was fortunate to be seen by a knowledgeable doctor who treated me and sent me to a rheumatologist. My career as a rheumatoid arthritis patient began.
I spent years on methotrexate which helped me about 50%. I tried most of the biologics in between being treated for three different cancers. Orencia worked. Most did not. Then I developed the 13th black box warning for methotrexate, soft tissue necrosis. The necrosis was in radiated breast tissue and it took ten months and a surgery to cure. I no longer had a DMARD, disease modifying anti-rheumatic drug, to treat my RA. My trusty methotrexate was no longer trustworthy. Because of my cancer history and my adverse reactions to a variety of drugs, I was running out of options.
Rheumatoid arthritis is about inflammation. The inflammation does not stop at the joints. My RA has affected the small joints in my inner ear giving me intermittent hearing loss. It has caused inflammation in my eyes. My eyes become inflamed and my vision blurry. My GI system is messed up.
My RA continued to worsen. Rheumatoid arthritis is listed as a progressive disease. How does it get worse? It is more than joint deformity. The progression seems insidious at first. Flares. Fatigue. The time between flares gradually becomes shorter. Now I am in pain constantly. I feel sick. Even my pointer fingers hurt as I type this into my computer. Walking and standing are not easy on swollen feet. Swollen hands are as bad. The edges of my symptoms are blunted temporarily by enough Medrol and tramadol. My hands are deformed. My right hand deteriorated over time. The deterioration of my left hand was sudden. Over a period of a week my left hand became swollen, warm and in acute pain and quickly deformed. I did not think it was possible to happen as quickly. My feet and ankles seem permanently swollen. Wrists, elbows, knuckles, shoulders, back, jaw, neck.
The only biologic left for me to take was Orencia. I had been on it by infusion for a year in the past. After a year I developed a flu and the Orencia stopped working. Actemra had been a possibility but listed as one of its risk factors was a ruptured intestine due to diverticulitis. Those with a history of diverticulitis, should not be on it. A study found that among those on Actemra, there were 2.6 times the general population rate of ruptured diverticulitis. I did not want the risk.
So, it was determined that I would try Orencia by injection. I have been on it for seven weeks. I feel no different. My swelling goes up and then down and back up again.
The stats say that Orencia will reduce symptoms 20% at three months for half the RA patients. That means a 20% relief if you are a lucky one.
Orencia reduced symptoms 50% at six months for half the RA patients. Less than 10% of patients had more relief. None went into remission. 0rencia retails for $2700 a month.
I am a cheerful, optimistic person. However, as my options run out and as more limits are placed on my daily life, I find myself discouraged. The RA hill of disability that I pull myself up and over every day is getting steeper. The climb is a struggle and the outcome less sure. I am no longer hopeful today. I already know what tomorrow can bring.
I wrote this yesterday. Being discouraged is okay. It is okay to pause, to take a break. Having a painful disability is exhausting. Then after the pause, it is time. It is time to gather your resolve and make this very day the best you can. Life is still good after all.