Nurses with lupus

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    Hi all! I was diagnosed with lupus this last summer and have since been started on immunosuppressants and steroids. Therefore I get sick every time I turn around. Any other nurses out there that are suffering from lupus. If so any tips for working with this disease!?!?
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  3. 5 Comments so far...

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    Not Lupus, but polymyositis. This leaves me too weak to work. I never expected to be disabled like this, in fact I even told my co-workers that I expected to work until the day they had a coffin waiting for me at the time clock as I punched out. I envy you being able to work! Back on track, you didn't give much information to go on. Have you talked with your doc about this? Maybe a med change would help. What position are you filling now? Can you move to a position with less direct exposure to infectious patients? I'd say get away from a medical floor, but an ortho floor should be much cleaner. Are you a hospital nurse? A friend had problems with the fluorescent lights aggravating her lupus. Maybe home health work would be a better choice? Those are the suggestions that come to mind.
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    I still work 40+ hours a week. It's hard tho and A lot of the time I literally come straight home and go to bed. As far as meds go I was doing prednisone, plaquenil, imuran, flexeril and tramadol. She recently added Voltarin and robaxin. It seems to be helping. I also wear a mask to work to try to prevent infection. I did get off the med-surg floor I worked on for five years. I now work in the outpatient infusion area. Mostly dealing with cancer patients and people with lupus, chrons (sp) and MS. So thankfully I don't have a lot of contact with the infectious. I am lucky that I don't have problems with the lights at least yet. But do suffer from headaches frequently due to inflammation in my jaw. How long after you were diagnosed did you have to quit your job!?
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    Actually I lost my job due to inability to work (nights in ER's for 25 years). Went from world class ER and trauma nurse to disabled. Had 8 wrong diagnosis' and had to live on my retirement savings. Finally found a rheumatologist who diagnosed me on sight. I take Plaquenil sq and Humira sq. Have Vicodin for pain, but if I can keep a low stress life, don't do any heavy lifting, I can get by with ibuprofen. Was diagnosed 12/2010. My doc says best I'll get is 70% of normal function. I keep trying to find sedentary work for a few hours per day (I can stand for less than 10 minutes, and only walk short distances without something to lean on. Muscle weakness really sucks, but if I push too hard it sucks plus I'm in pain). Glad you're already adapting your work style. Hope you have family and friends for support. Mine have all drifted away. Rambling, let me know if I can help. Our conditions are so different I'm not sure I can offer you much.
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    I meant Methotrexate and Humira sq.
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    I am nurse that has been diagnosis with lupus and RA. I was diagnosis in 2009. I am on methotrexate,plaquenil,gabapentin,lortab, zanaflex, folic acid and I get infused monthly with Benlysta. Since I been diagnosis I have miss so many days from work. I work on Med-Surg floor. I been on Medical Leave for year now. I do not want to give my job up because I love nursing. I know it may be best for my health.Med-Surg floor is very stressful and busy. Lupus does not tolerate stress and worry. I always have flare ups. I want to do telephonic nursing or case management. I have found that it is very hard to transition to case management without my BSN. I am 46 years. I only know nursing. I have been a nurse for 22 years.
    Last edit by mdavisRN on Sep 22, '13