Author: Mary Mann

Coping with the Symptoms of RA

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Beginning with the first symptoms of my rheumatoid arthritis (RA), I have lived in daily pain. It has been over four years. It has been a long time. Rheumatoid arthritis is an autoimmune disease. My body is on a suicide mission to destroy the linings of  the movable joints in my body. It is a scary disease in that it is unpredictable and it is progressive. I spent the first two years with severe fatigue/malaise. And it was as bad as the pain. This malaise is caused by cytokines, products of inflammation. Cytokines circulate in my bloodstream spreading RA damage. Add that to a high level of pain and it can be overwhelming. I wake to stiff, painful joints. In the morning as I walk painfully down to the kitchen to make coffee, there are times when I have become angry and tired of it all. I start the day in pain and I end the day in pain. It is too much. My feet are becoming deformed and I find it difficult to walk …

Knitting and RA

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Last summer I had a strong urge to take up knitting again. I hadn’t knitted in many years and wasn’t sure I remembered how. I bought a book for teaching children how to knit and learned quickly that knitting was like riding a bike, once learned not to be forgotten. I enjoyed the projects. Easy. Big needles. Satisfying. The basket in the picture was one of the projects. Circular needles. A few years ago I was sent to a  hand clinic for my RA. I learned a series of exercises to strengthen my fingers, hands and wrists. It was the most helpful process I had had for my RA. I still do the exercises. I have added knitting as another way to exercise my hands. I enjoy projects simple and repetitive and I enjoy projects with complicated precise instructions. I usually knit a bit every day. There are times when I can’t knit. My hands are too inflamed. Sometimes my shoulder is too inflamed. So I just stop for a bit and carry on when …

Four years of RA

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  I was diagnosed with RA four years ago, this month. The first few years were whirlwinds as I was also diagnosed with two cancers that each involved surgery and radiation treatments.  My RA moved to the back seat then to the front and again back and forth. Now it is center stage.   In 2015, I was started on infusions of Orencia. Once I realized that the biologics only help your RA by about 50%, I settled in and appreciated that they helped that much. In July the next year, I developed a horrific flu. I haven’t had a flu for years. It was exhausting. Plus, the Orencia was not working any more. I started having bad flares. My rheumatologist stopped the Orencia. After a few weeks, I was started on infusions of Remicade, a TNF inhibitor. By the third loading dose, I was having a severe flare plus I was having a bad reaction to the Remicade. I was ill. It took two months for the Remicade to clear my system and for …

RA Journal 10-17-16

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I took the last pill in the medrol pack this morning. I am back to sleeping again. I feel better.  My feet as well as my hands remain a problem. Swelling. Stiff. Pain. But manageable. After being a recluse for a week, I made it out to Kohl’s to use my 30% coupon yesterday.  Fall clothes and a few Xmas presents. Panera’s for squash soup and salad. Michaels for a Lion’s Brand wool that is not easy to find. It is cranberry, bulky and beautiful. Home to rest. Today is another sunny day in ABQ. Still a warming fire is pleasant. Life is good. The medrol pack has saved me again. I was very ill and was getting discouraged. I don’t know how long this improvement will last but I will enjoy it while I have it. It feels like a stay of execution. I came to the conclusion a while back that my RA is progressive and that there is no cure. There is only symptom relief. For some, the biologics hold the promise of damage control. That promise at best is for 50% of …

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 …