RA journal
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My RA book

I have started working on my book again. Since I am inclined to reference my own book when I am writing a rheumatoid arthritis article, it is probably time to finish it and have it published.  It is good and achieves the original purpose.

I have had RA for eight years. During those years I have had soft tissue necrosis in my radiated breast caused by methotrexate.  Soft tissue necrosis is the thirteenth black box warning for methotrexate. I spent ten months in treatment. No more methotrexate.

The year before I had my third cancer which was traumatic. Then it  took a long time for my hair to start growing back. Lucky for me my grey hair was mostly gone and still is.

As my life is shared with RA, I have those moments where I am so fatigued, I can’t stand it. I have moments when I go to bed in pain and then I wake in pain. I feel angry and frustrated. My thought is I can’t take it anymore, but I realize deep down that I will.

RA is a chronic disease. It is disabling. I use a cane because my feet are numb and my balance uncertain. I no longer drive my mini cooper for the same reason.

Over the eight years, I have learned that RA is more than seeing my doc quarterly and taking my RA drugs. For a third of us, RA biologics don’t work at all. For many more there are serious side effects. 

Some drugs are prohibitive with some comorbidities. After three cancers, I can’t take the INF inhibiters as they can cause cancer.

Actemra is risky. I have has histoplasmosis so risk recurrence in a deadly form. I have also had diverticulitis and would risk ruptured intestines and sepsis.

Lucky for me Orencia has fewer complications and is working for the time being.

What all this means is that there are many with RA who have no treatment. That in turns mean they will have joint damage and complications associated with untreated RA.

So, it also means that since RA drugs don’t work for so many, there has to be another answer. My book is slowly coming together as my experience broadens and I understand the full ramifications of the diagnosis, rheumatoid arthritis.

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