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It’s Not Just Pain – It’s Lupus Pain

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I have lupus. I’ve had it for fifteen years, so I know how it feels when it flares. Right now, it’s flaring. This is ironic because the new rheumatologist, from Thomas Jefferson Hospital in Philadelphia, doesn’t think I have lupus. It’s because the first two visits we had, I was feeling well, except for fibromyalgia pain, which is entirely different from lupus pain. People with both diseases know what I mean.

My lupus labs came back normal, which didn’t surprise me. Over the years, my labs have come back positive and negative. It depended on how well controlled I was on the medications I was on. I also used sunblock 24/7, since not only sunlight triggers lupus, but also UV lights and even being in a grocery store for an hour or two could trigger a flare. Then the new doctor decided I didn’t need Plaquenil, the anti-lupus medication I’ve been on for the entire fifteen years I’ve had lupus (except for three months when my eye exam came back abnormal. Plaquenil can affect your eyes and I didn’t want to end up blind, so I decided to go off Plaquenil). It’s a long-acting drug, taking approximately three months to kick in and three months to get out of your system. That time, exactly three months to the day, I started to flare. I went back on it and stayed on it. I even took it during my pregnancy, after my OB researched it and found it had rare effects on the fetus. My son, who is now ten, shows no abnormalities from its use.

So, it’s been seven weeks since I’ve stopped the Plaquenil—and I am flaring. I’m running low-grade fevers, am fatigued beyond belief, sleeping 14–16 hours a day and having pain that is nothing like fibro pain, or any other pain. It’s mainly in my fingers, wrists, ankles and toes. To write this, I took two Vicodin and two Aleves. My fingers are swollen and the joints are tender to touch. I have pain across the middle of my back, which shows up when I’m about to have a bout of lupus pneumonitis. This is when lupus invades the inner lining of the lungs. It causes respiratory failure, with or without infection. I’ve had this happen four times. The first was in Florida, when I came into the ER with an oxygen level of forty-two (the normal is 70–100). My pulmonologist treated me for pneumonia, even though the cultures came back clean. The second time in, I had a nasty bronchitis, which broke two ribs from coughing. The doctors assumed infection, but again they came back clean. That’s when the pulmonologist tested me for pneumonitis and it came back positive. I was already on steroids, so inhalers and nebulizers were added for a new diagnosis of asthma.

I was humming along, with no lupus flares, on three lupus medications: prednisone, plaquenil and methotrexate. The pulmonologist here in New Jersey stopped the methotrexate because it can affect the lungs. But I still ended up in the hospital three times in the last eighteen months, all in respiratory failure—one with fulminant pneumonia, but the other times my cultures were negative. The pulmonologist was leery of the diagnosis of the doctor in Florida. (How ironic it is that he is moving to Florida and will practice down there? Perhaps he’ll practice at Martin Memorial in Stuart, Florida, where the pulmonologists are excellent.) Meanwhile, my “Jeff” doctor wants me to see a “Jeff” pulmonologist, since “Jeff” doctors think no one is better than their doctors are. I have to comply; otherwise, I won’t find a way to come off the prednisone. My osteoporosis will stop; I already have it in my lumbar spine. My cataract will hopefully stop growing, another effect of prednisone.

For now, I’m spending a lot of time in bed, trying to keep my son busy now that school is out. I have an internist appointment tomorrow and hopefully we’ll get to the aquarium on Tuesday. Like the commercial, Tuesday afternoon is the best time to visit the aquarium, at least according to Justin Hayward and the Visa people. I just hope I can get up and go. It’ll be a blessing for all of us.


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