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A Book and RA at Ten Years

I am putting together a compilation of my articles about rheumatoid arthritis.  It is a practice book for developing  the skill set of  editing and publishing  a book. My plan is to produce a series of books under the general heading of Nurse Mary’s Notes. These books will translate the medical jargon we hear at the doctor’s office and on the internet into a language we understand and find useful.

In the process of  gathering my articles, I realized several things. First. I was diagnosed with rheumatoid arthritis ten years ago. My perceptive is very different now than it was ten years ago. At the time I was grateful to have a diagnosis. I was a critical care nurse and my mind looked for solutions to problems. There was a plan of treatment for RA. I would follow it and I would be okay.

My rheumatoid arthritis history was peppered with three different cancers with three different treatment plans. So on hindsight my rheumatoid arthritis was far more complex than some might have. My rheumatoid arthritis refuses to come under the  control of the wonder drugs to this day. The complicated nature of my RA in addition to the cancers makes for a challenging ten years. I cannot deny it.

The truth is that rheumatoid arthritis is progressive and there is no cure for it. Equally true is that the progress can be slowed with early and aggressive treatment. The important truth is the need for those with rheumatoid arthritis to be diagnosed as early as possible and to be treated aggressively as early as possible. I do believe that this is the current policy of the ACR in theory. In practice it takes  a new patient up to six months to be seen  a rheumatologist.

My rheumatologist regrets not starting me on the biologics earlier. At the time the TNF inhibitors were not recommended for those with a history of cancer. As my RA worsened it was agreed that I could safely try Rituxan. It didn’t work.

At the time I was on injectable methotrexate so I had some relief but then  I developed the methotrexate complication, black box number thirteen, soft tissue necrosis (radiated breast tissue). It set me back ten months and I could no longer take methotrexate.

Orencia helped. I took it two different times. Then It stopped. Actemra is the last drug available for me. It helps but its help is starting to decline. I have been told there is no other treatment for me. I am being sent  to the pain clinic. I am beginning to think I better go.

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