All posts tagged: RA progression

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 …

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 …

Renoir and RA

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Bal du Moulin de la Galette sold in 1990 at Sotheby’s for $79 million. Renoir painted this scene of popular Parisian life in 1876.   It was a typical Sunday afternoon at Moulin de la Galette in the district of Montmartre in Paris.  An impressionistic image. Vivacious and joyful in nature.   In fact, he painted not one but two of the same scene. One large and one small. Almost identical with minor differences in style. The larger of the two paintings hangs in Musee d’Orsay, which houses the largest collection of impressionist masterpieces in the world. The smaller of the two, the one sold for $79 million, is in a private collection. Pierre-Auguste Renoir loved painting. He started his career at the young age of 13 working in a porcelain factory. He frequently visited the Louvre to study the French masters.  He spent his lifetime studying and admiring the paintings of  the master painters. With his factory earnings, he joined Alfred Sisley, Frederic Bazille and Claude Monet for classes at Charles Gleyre’s studio.     Renoir along with Pissarro, Monet, …

My excuse

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Rheumatoid Arthritis, i.e. Rheumatoid Disease, can really screw up your plans. My plan was to complete Word Press Blogging 101, organize my research methods, improve my writing skills and write daily. Then the fatigue sets in.  Low grade temperature, swelling feet, ankles, hands and wrists, neck. Pain saturated every joint in my body including my jaw.  I became a slow-moving zombie, too sick to become depressed. Life came to a grinding halt. Too nauseated to eat, but not losing an ounce.  Damn it!  I could see myself in that wheelchair and I just didn’t want to go there. My focus became surviving. I am on a schedule of tramadol and gabapentin. I am on prednisone. I could increase it but hate to.  More sleeplessness. I am on methotrexate injections, Plaquenil, and meloxicam plus the sister medications taken for the side effects. I understand better than I ever had before that I have few options left. I am heading for the slippery slope. Scary thought. My rheumatologist has given me most of what she had. Next …

Managing RA and commitments

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I made a big accomplishment recently that makes me very happy.  I  completed my role as planning committee member for Cancer Support Now’s 4th Annual Long-Term Effects of Cancer Survivorship Conference.  The event was successful. I could see it being valuable to attendees just like it was for me last year.  I had loved it. Felt grateful for it. I had wanted to be involved in it. Being involved had meant crossing town at 5 pm for planning meetings.  Crossing town just at the time when the pain and the fatigue of RA increased for me was a big one. I made the decision to go. It was the first big commitment I had made since my odyssey of two cancers and a diagnosis of progressive RA began. I made the meetings. The conference was coming together. The Monday of the event I woke to severe pain in all my joints. It was not good. The problem with RA is that it is totally unpredictable. Severe fatigue or severe pain are random occurrences.   The pain kept …

RA and cancer support

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Cancer and RA seem to go hand in hand. Shortly after I was diagnosed with RA,  I was diagnosed with two different cancers, thyroid cancer and then breast cancer.  I had the big C hanging over me like a grey cloud, leading me down the cancer road with all the usual experiences.  After surgeries and after radiation treatments, I started looking for help, for support. I found it with the Cancer Support Now Third Annual Long Term Effects of Cancer Survivorship Conference.  A long name worth repeating as I became totally impressed with this organization. Dava Gerard, MD, a respected physician in the cancer field, gave the talk ¨The Journey: From Surviving to Thriving¨.  It was just what I needed.  Arti Prasad, MD presented ¨Holistic Cancer Survivorship¨.  Again excellent. There were breakout sessions. Free lunch from Jason’s Deli. The morning had started with a generous breakfast. I felt welcomed and very glad to be there. Since then, I have joined the board of Cancer Support Now and am on the committee for this year’s conference. Both are big commitments …

Finally, a life

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I really thought I was going to die last year.  To prepare, I filled out the final wishes form.  Next, I made an attempt to simplify my financial records. I said thank you to all the people who have been helping me the last few years. I had a garage sale. What the heck, I thought, I would be the one to get the money if I had one before I died. Just as I thought things were going to get worse, they were already terrible, I started coming out of the methotrexate fog.  I could think clearly again.  O happy days.  At least I had my mind.  Both cancers could return.  My RA could leave me immobilized.  Yet, I would be able to read.  My favorite thing to do.  Preston and Child’s Pendergast series. Baldacci’s adventures. All the fascinating medical books. I could be happy. The methotrexate injections, Plaquenil, leflunomide and the prednisone finally calmed the ever-present inflammation in my body.  This was after 2 years.  And it may not last long, but it is …

RA Progress, Thanks to medical research

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It was 1965 and time to do his urine test to determine  his insulin dose. He was diabetic. He followed procedure carefully.  He went into the bathroom and closed the door. He picked up his urinal and proceeded to fill it. He left the bathroom and handed the urinal to the nurse.  She took it into the bathroom. She dipped her measuring tape into her patient’s urine. She waited as it changed color. She held it up to the chart. A 2+. She went back to the nurses’ station and drew up the units of regular insulin designated for a 2+ test result. She administered the insulin to her patient.  Diabetic management in the 60s.  Blood glucose meters had not been invented yet. During that same time, there was not a lot of relief for rheumatoid arthritis. Prednisone was new. Methotrexate for RA and all the biologics were a long way into the future. RA  progressed relentlessly until a person was totally crippled and in constant pain. Death would be the only relief. Rheumatoid arthritis is still not an …