Author: Mary Mann

At the infusion center

I am taking a big chance. I went to the infusion center for a dose of Actemra. Actemra blocks the activity of the messenger cytokine, Interleukin-6. It was the  same routine: sign in at the reception desk, weight, vital signs, 20 questions. I am in a recliner with my feet up. IV started. Blood work. Tylenol and Benadryl to avoid side effects. I think this was the routine for all my infusions. My son, David, was with me. The Actemra infused without incident. I didn’t die. We were there for three hours. I had mixed feelings about this drug. It stemmed from several considerations. I have had a lot of bad luck with the biologics. The last was the TNFi Remicade. After two doses I became so ill I thought it was over. I felt weak and lethargic. No appetite. It lasted a month and I survived. I was reluctant to try another. Actemra was the last one available to me.  My RA Doc feels the drug is safer than no drug because the progression …

Real Life and RA

Having a debilitating, chronic disease makes me much more aware of others who struggle to have a normal life with a chronic disease. For those who have RA,  pain is a central issue. The exhaustion that comes with inflammation is also the issue. Life becomes a daily struggle for those who wake up in pain, and who need to make that pain manageable so they can carry on with their daily duties of children and/or work.  Depression is common among those with RA. Easy to see why. I am not easily depressed. I can see too many of the little pleasures of life that make it worth the downside. But there are moments when the struggle to put pain in its place becomes just too much to live with. That is a big, clear signal for a time out. I can have a time out and so can many who have family to take the children or have a job where hours are flexible. But there are many who are  scraping by so need to …

RA feet and orthotics

My RA started in my feet. About 20% of patients are introduced to RA via painful feet and about 95% of RA patients eventually do have feet involvement.  RA struck my poor feet first.  Diagnosis was slow as my primary doc, an internist, later said I was too old to have RA and that the pulses in my feet were strong so my feet were fine. Once I was diagnosed. Methotrexate (MTX) was my first RA drug. The dose was gradually increased until I reached the max of 25 mg/week.  I tolerated the nausea and diarrhea which eventually passed.  MTX helped me but by this time my feet were in a lot of pain and I walked with great difficulty. I was sent to a podiatrist who declared right off the bat that he didn’t do foot surgery for RA. Fine, I thought. I had read about the horrors of RA foot surgery and I wanted none of it. I did need to know what would help. He did three things for me. He ordered …