All posts tagged: RA

RA Journal 10-13-16

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It is 5 am. Coffee perking. Cozy flames from the fireplace. Antoine, my 10 year old Maine Coon cat, fed. No sleep at all, not even a little dosing.  So I  finally decided to get up and start my day. I have RA. It is a bummer. Presently, I am on prednisone for a flare. I like the medrol packs which plus my regular prednisone help me feel better. But it is day four and the sleeplessness side effect has kicked in. It might last another day. I will eventually sleep. Most with the diagnosis of RA have a progressive form of the disease. I can say I have been in a constant flare for almost 4 years. That means my body has been continually inflamed for almost 4 years. Definitely not good for my body.  Sometimes are worse than other times. None of it is good. Mine started in my feet.  My toes, my feet, my ankles are reaching the point where I am worried about mobility. My knuckles can be bad as several of my fingers can. My right shoulder is worse than my left but the left is …

Remicade started

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                                                                                             Remicade is the new RA drug I am starting. September 2016. There is a loading dose, another dose two weeks later, another a month later. The regular schedule for me will be 8 weeks apart.  I have had the first two doses. It is given by infusion over two hours. The whole thing lasts about three hours. I haven’t had any reactions. Nausea is a common side effect. I have it with methotrexate so I am armed with a strong anti-nausea medicine and I am good. Last month was tough for me. Flare plus flu.I have been in a perpetual RA flare for three years. The only difference is that sometimes it is much worse than other times. It has been on the worse end of the scale for …

Remicade

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My treatment for rheumatoid arthritis, RA, is moving in the opposite direction of normal. Because I was diagnosed with two cancers and rheumatoid arthritis in the same year, the wonder drug biologics were off limits for me. They presented a higher cancer risk. Eventually as my RA worsened, quality of life became a factor. Methotrexate(MTX) injections help, but not enough. I had tried the triple treatment of MTX, Plaquenil and sulfasalazine without success. Leflunomide was next, but it didn’t work either. The small molecule DMARDs were exhausted as treatments.  The biologics were next. Rituxan was considered the safest both by my rheumatologist and by my oncologist. I was infused with Rituxan. It didn’t work. Next safest was Orencia. I was infused with Orencia. It helped. It helped about 50% which was the norm for it. I received monthly infusions. But my flares became much worse at 10-11 months. Orencia was stopped. Next is Remicade. Remicade, infliximab, was approved for RA in 1999. It is a TNF inhibitor. My rheumatologist had a serious discussion with me …

RA nodules

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Rheumatoid nodules are commonly talked about when rheumatoid arthritis (RA) is discussed. It might surprise you to know that only 7% of those newly diagnosed with RA have rheumatoid nodules. So they are not characteristic symptoms of newly diagnosed RA. Overtime, about 25% of those with positive Rheumatoid Factor (RF) develop nodules. Nodules are frequently present in the more severe cases of RA, those more likely to have rapid progression of joint destruction and to develop vasculitis.  75% of those with Felty’s syndrome, more common in white males, have rheumatoid nodules. Current smokers with RA plus nodules usually have more severe disease. In those with seronegative rheumatoid arthritis, about 6% develop rheumatoid nodules. The condition of having rheumatoid nodules is called rheumatoid nodulosis. The nodules form below the skin near joints. They are firm and frequently moveable. They are not tender and are not usually harmful. They are 2 mm (.008 inch) to 5 cm (2 inch) and may occur singly or in clusters. They are formed in three, under the microscope, stages: acute inflammation …

A celebration of Recovery 10,000Waves

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About as high as you can go up into the mountains in Santa Fe on the road to the Ski Basin is tucked a high-class Japanese Spa specializing in bodywork and skin care. Ten Thousand Waves.  My destination. Just what I need. I desperately need. My treatment choice is NOSE TO TOES. A Mother’s Day gift certificate from Chris and Katie. I live in Albuquerque and this would be my first road trip in three years. I gassed my Tin Lizzy, my 5-year-old Mini Cooper Clubman. Pepper white. Turbo. Added bottled water, spa directions.  Put on my winter jacket. Ready to go. Finally!  This is November. I headed toward I-25. Sunny day. Cool. I am on the road.  I am also on the recovering end of a devastating year. The year was 2013. Almost three years ago. I had been diagnosed with a severe rheumatoid arthritis followed by two different diagnoses of cancer. Surgery. Radiation for each. Pills forever. No relief for the RA until this year with the start of Orencia. It is a …

Test Week

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Since my Rheumatoid Arthritis and my two cancers were diagnosed in the same year, it is logical that  milestones occur the same way.  In one week I had  tests for my two cancers. On Monday I had a Thyrogen shot in the butt. The medication  acts like TSH, a hormone  that  normally stimulates your thyroid. ( $1400 each without insurance, $135 each with). Tuesday I repeated Monday with another shot. On Wednesday I went to nuclear med for a radioactive pill.  I am not radioactive. I feel like I am. I am also given two containers of MOM. The tech said it was a mild laxative. One tonight. One Thursday night. it wasn’t mild. I was also instructed to eat lightly. On Thursday I went to Radiology Associates of NM for a diagnostic mammogram. I do love this place. Friendly people. Coffee. Special cute patient gowns.  I felt that I would be fine, but I had the vivid memories of when I was not. So I still worried. Lucky me!  There was no sign of cancer. A …

Walking with Wisdom Woman

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RA Attitude After an MRI of my lumbar spine. Seeing the bad news. Being sent to yet another specialist. Spine and Pain Clinic. I was totally discouraged. In the same small office complex, I visit my rheumatologist, my neurologist, my oncologist, my palliative care nurse and now a pain doc. And this is just one of the office buildings I visit. I was discouraged because I could see it as another proof that my body was falling apart. Am I on a steep slippery slope looking downwards? Scary. I was scared. Then, as if by magic, my Irish-French Canadian genes kick in. What to do? A long time ago I had come to the conclusion that I needed to keep my primary focus on the activities of my life.  My writing. My family. My friends. My Hobbit House Projects. I would not ignore my medical issues. I would care for them well. And then I would bring my focus back to the activities of my life. Sometimes I could do more and sometimes less. It …

Ruth explains RESET

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The delicacy of the mahogany writing desk. Petite. Leather inlay surface. Slender wood turned legs. Just right for Ruth.  She sat back straight in her neat smoothed dress. Her eyes twinkled in greeting. “I need help,” I said. She glanced toward the strait backed chair next to the desk. I sat. “I am discouraged. Exhausted. Defeated. Weak. Worried.  In pain. All of it in a jumbled pile in my mind. Too much.” She smiled her little smile as she looked into my eyes. “It does sound like too much,” she agreed.  “It weighs like an anchor on your soul leaving you feeling stuck. You need relief.”  She understood as always.  “Maybe it is time to RESET yourself. You are overloaded with tough stuff.” “Let’s have tea and sit in the big cozy chairs, “she suggested. As we sipped our tea and munched on lemon cookies with buttercream frosting, she explained the process. The first and most important RESET step is the Purge. The purpose is to empty the mind of all concern. Meditation can be too …

gardening notes

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Albuquerque will be 95 today. Yesterday it was 98. We missed the set of super hot temperatures for July. So we are just catching up. Blue skies. Nice. This is the Rio Grande. We have plenty of water in it this year. And now we have more. Torrential downpour came later this afternoon. Reminds me of Miami. I am happy to see the rain. I would dance it it but the lightening forbids it.  I have those big office wastebaskets to gather water where it comes down the hardest. This is great for my RA as I just need to scoop the water in a little bucket to water container plants. I feel like I am doing a good thing. I have passed out of the RA Flare Fog. Don’t know if it is residual from the Medrol Pack or the Orencia starting to work. I am cheering for the Orencia. Feels so good to move.  Hope it lasts for awhile. Back out in the yard. This is Apricot Sunset. Climber. Strong and beautiful.  Roses …