Month: February 2016

RA: to run and hide or to jump into the fray

    I have passed the three-year mark with the official diagnosis of rheumatoid arthritis.  I am better in some ways. I can work the disease better. I am worse in some ways. The damn thing just won’t go away. I remember when I realized that I only see my rheumatologist at best every six weeks and at worst every three months. I realized that I was on my own most of the time. I was on my own to manage my rheumatoid arthritis, two cancers, my home, my life. And if I didn’t take charge, no one would. At 72, I had better get busy. I did think about it. One choice was to withdraw into myself. My rheumatologist said many do. I also had the choice of focusing on the here and now and managing my situation. Historically, when I have been in a bad place I have felt sorry for myself a bit. I call it whining. A little is okay. It is just something a person sometimes needs to go through. …

What does ACR20 mean

    Have you ever thought about what the numbers mean when they say 50% ACR20 at 6 months? This simply says 50% of the group had a 20% response at 6 months. It means half improved by 20%.   The ACR improvement criteria includes ACR20, ACR50 and ACR70. Meaning, 20%, 50% and 70% improvement. Easily enough to understand. I was reviewing a research paper on Orencia. I will be having my 8th infusion on Thursday. I was wondering if it was being effective enough and if I should keep taking it. The article had a chart for clinical responses in controlled trials. I reviewed the column that said inadequate response to methotrexate (The reason for being on Orencia; I think my methotrexate response is 50%, but it is not enough for me.) A response of ACR20 3  months 62% 6  months 68% 12 months 73%   This means that at 3 months 62% of the patients had a 20% improvement This means that at 6 months 68% of the patients had a 20% improvement. …

Orencia seven infusions

Next week I will have my 8th Orencia infusion. My time in the infusion center is about an hour. It is usually uneventful.  I am given benedryl, pepcid and another little pill I was told was for allergies. Blood is drawn for inflammation markers, C-Reactive Protein and SED rate, metabolic panel and CBC. Since I have been having the infusions, my neutrophils have become normal. My joint swelling has been greatly diminished. My pain levels have been reduced. I do have a weird cough. It is weird because when I enter a space away from home, I start coughing. It goes on for a bit and finally comes under control. Sometimes I feel like I have the flu, but I don’t. I still don’t have as much energy as I would like. I do have some RA problems. Still I am better than I was before the Orencia. I went to a number of online communities to see what others were experiencing with Orencia. There were many miracles. Good results. There were some with the …