It was seven years ago this month. I was acutely ill with my first encounter of rheumatoid arthritis. My illness had not been given a name yet. A week before that I had seen the ER doc who started me on prednisone and who was sending me to the rheumatologist that I would see in about another week. I had very little sleep. A few hours a night at most. I was in excruciating pain. Life was not good.
I can look back with a sense of relief. I no longer have the kind of pain that made me think I had broken glass shards in my joints. It took several years after my diagnosis for my RA to settle down. I never went into remission. My inflammation has always simmered. Methotrexate was my base. I finally settled into 25 mg subq once a week. It helped. After a few years my pain was never quite the same as it was originally. My feet became central to my discomfort. Custom orthotics and Dr Comfort shoes made a big difference. My feet became deformed. I developed neuropathy. I walk with a cane.
I was not given a biologic DMARD at the time because I developed two cancers the same year as my RA. A few years ago, I was started first on Rituxan and then later on Orencia. The Orencia helped for a year, I was just getting started on Actemra when I developed the third cancer. I was just getting started on Actemra a second time when I developed an abscess in necrotic radiated breast tissue. The infection has continued on through surgery and now a month following surgery, There will be no more Actemra. The surgeon had me stop the methotrexate.
I have been off methotrexate for about three weeks. This is the longest since I started it. I’m not sure how things will work out. I still have the infection, the irrigations, the draining crud. My joints continue to simmer and burn. But so far, I have no feeling of glass in the joints or the extreme malaise that comes with it. Guess I will just wait and see what happens next.
Note: It took ten months for the wound to heal. It necrotic tissue was caused by methotrexate. Soft tissue necrosis is the thirteenth black box warning for methotrexate.