All posts filed under: RA journal

Cannabis at Eleven

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For about half of us the biologic medication of the last twenty-five years has been helpful in reducing symptoms and lessening disability. Methotrexate has been a big help. It is especially helpful when given in combination with the biologics. The JAK inhibitors can cause cancer. Since I have had five cancers, they are not advisable. It has been eleven years since my diagnosis. I have learned to live with my symptoms. I do know that it is important to keep moving. Sitting in your favorite chair reading a good romance novel or instead catching up with your broadcasts, or podcasts, is inviting. But it is still important to alternate physical motion with sitting in the easy chair. We all know how stiff we feel after sitting for a while. It is called gelling. I still have a bad flare that lasts a week once a month. There is not much I can do when my pain level is between a five and a seven. The inflammation level is high and makes me feel sick. I …

RA, a Progressive Disease

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I have seronegative rheumatoid arthritis. That means I have more issues with inflammation and less joint damage that a person with seropositive rheumatoid arthritis. My rheumatologist sometimes thinks they must be two different diseases. Once diagnosed both are given the same treatment. I was on methotrexate for seven years. It helped about fifty percent. Biologics helped anywhere from twenty to fifty percent. The combination made life bearable. Methotrexate had been a difficult drug with the side effects of nausea and diarrhea. They passed. With the injectable version of methotrexate, the side effects disappeared. I have a history of breast cancer that required surgery and radiation. It left my breast tissue with poor circulation. I developed methotrexate black box complication number thirteen, soft tissue necrosis. It took ten months to heal and included surgery. Absolutely no more methotrexate, or it would happen again. So I lost my fifty percent relief. I was lucky to get twenty percent relief with the biologics. I have been through most of them. The TNF inhibitors can cause cancer and the …

New Book and cannabis report

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I finally finished my book. I published it as a Kindle book. An adventure. A romance. Science fiction.  Matilda Finnegan meets up with an old acquaintance . A handsome six foot white hair, sexy  blue-green eyes charming man. Romance blooms. Adventure beckons. The story is about outcasts from a nearby planet finding refuge on Earth. Their obstacles and their romances.  Book website, Matilda and her Alien and place to buy,  Amazon Book site I have known about my rheumatoid arthritis for about eleven and a half years. A little more. Despite Kevzara, steroids and cannabis, I still have a week long severe flare at least once a month. The flares are bad. Most of the moveable joints in my body are affected. All but my knees. Strange ads that seems. However, flares  are still better than what they were. The inflammation  is reduced. My RA seems to simmer the rest of the time. Not good but better than it was. I am on the last biologic left to me. I either have tried them or …

Diagnosing rheumatoid arthritis

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Once a person has at least one joint that is painful and inflamed, a rheumatologist can use a ten point check to help diagnose rheumatoid arthritis (RA). The assessment covers four areas: joint involvement, serology, acute phase reactants plus duration of symptoms. There is a total of ten points. A score of six confirms a diagnosis of rheumatoid arthritis. Here is how it breaks down. Choose one from each group and total.. A. Joint involvementOne large joint 0 points2-10 large joints 1 point1-3 small joints 2 points4-10 small joints 3 pointsGreater than 10 joints including at least one small joint 5 points B. Serology (blood tests)Negative RF and negative ACPA 0Low positive RF or low positive ACPA 2High positive RF or high positive ACPA 3 C. Acute phase reactants(inflammation blood tests)Normal CRP and normal ESR 0Abnormal CRP or abnormal ERS 1 D. Duration of symptoms< 6 weeks 0 6 weeks 1 My choices are a total of 7. Note I am seronegative, and it took a lot of joint involvement to get a positive diagnosis. …

The Cruel side effect of Flares

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A side effect of having flares is their random quality. One day a person with RA may be out dancing with the girls. The next week she may not able to join them because she is not well. Repeat. And then repeat. Is she neurotic? Her friends may be thinking. They stop asking her to go with them. Another young mother with RA  may ask her husband or her mother to help more with the children when she is having a flare that puts her flat. She was able to explain the severe and random nature of rheumatoid arthritis flares. Her husband and her mother had come to understand the severe and random nature of RA and were happy to help her more when she needed it. So, this is what a person with RA has to deal with.  You may be spending a large share of your time in severe pain. You may have serious doubts about your future. People will still look at you and say you look healthy to them.  And although …

A book of fiction and fun

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I am in the process of writing my first novel. It is called Matilda and her Alien. Matilda owns a bookstore. One day a man mysteriously appears in her store to say that he is an alien,  she is an alien, and they are at risk of being murdered, by men from another planet. It is fairly easy to believe him. Bertrand. Handsome. Charming. Twinkling blue eyes. Then , of course, she had met him years ago.  Their adventures span the globe as well as nearby planets. There are many colorful characters. Ahmed, Baghdad interpreter, Dr John, a South African trauma surgeon, Isabella, the Santa Fe psychic, and places like Solana, Granville, Albuquerque and Minnesota. Will they be able to save their fellow mutant BlueStone from slave labor and death? I am having a lot of fun writing this book. It is a lot more fun to write than non-fiction. I continue on the biologic, Kevzara, for my RA, plus low dose Medrol (6mg daily). I can take more of the Medrol when I have flares. …

Writing and RA

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About six months ago I fell into a writer’s block. I could not read another article on rheumatoid arthritis or write another article about living with it  I continued to read my Danial Silva novels, and as time passed I let Bob, my sourdough starter, pass into sourdough heaven. Who knows why what did happen. But I changed. Yes, I did. I watched the world series with my son. I was totally amazed at how unpredictable a game of baseball played out. It was fun. I love the Phillies. I joined my son and became a Phillies fan. We watch all the Phillies games that we can. I know all the players. Bryce Harper, first base, JT catcher, Bohm and home runs. All the players are great. Last night’s game was exciting. The Phillies were behind. Bohm finally  tied the game and Castellanos made the winning play in the tenth inning. Wow! Seven years ago I wrote a  10,000 word start to a novel. I put it away. I decided to take another look at …