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Nurses with lupus

by ab39010 ab39010 (New) New

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!?!?

dthfytr, ADN, LPN, RN, EMT-B, EMT-I

Specializes in ER, Trauma. Has 30 years experience.

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.

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!?

dthfytr, ADN, LPN, RN, EMT-B, EMT-I

Specializes in ER, Trauma. Has 30 years experience.

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.

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.

Edited by mdavisRN

Another fellow "lupie" here... I'm a new nurse, 3 years, but one of those years was on/off while I was sick and getting diagnosed. 12 hour shifts do me in! I now work per diem so if I'm not feeling good I can adjust my schedule, but I need more work and let's face it...BENEFITS!! I am wanting to get in to the NICU asi think that may be a healthier place,but its so hard to get in towith no experience in it. I am dealing with a lot of questions and uncetainties on how to proceed with a current job offer and what is best for my health...we sacrifice ourselves, for our patients...and I think us "lupies" need to be aware and monitor that! You're not alone! I'm just as confused as you are lol

Working on getting diagnosed been sick for 5 years. It started hard core my senior semester of my adn program have actually been minimally ill since 2004. I decided to become a NP so I could have more control. I finished my MNSc this month in psych. I hope this works out.

Hey everyone,

I myself am in the process of getting diagnosed. Ive had problems with all the usual symptoms of SLE since 2011 when my stress went up d/t an ectopic. Before the ectopic I don't remember every really being sick. Since them, I don't ever remember feeling good. I have my first appt with a new doctor so I'm hoping it will go well. I was kind of wondering how work would be ivim dx'd with SLE and my rx's would make me more susceptible to infection. Since graduating I have pretty much only work in SNIF's and wellness clinics. I recently moved to arizona and will be starting with a hospice agency within the next week or two. Any advice?

dthfytr, ADN, LPN, RN, EMT-B, EMT-I

Specializes in ER, Trauma. Has 30 years experience.

Just a warning, if you suspect Lupus or any auto-immune disorder, run, don't walk to a rheumatologist!!! In 1997 I noticed I could no longer throw a basketball as high as a hoop. Far too many visits to internal med, then ortho, then neuros when I could no longer walk. Some "I don't knows" (I respect them) some wrong dx's, some outright dangerously wrong dx's. Finally in 2010 I got to a rheumy who diagnosed me in under 5 minutes (polymyositis).

Immune system attacking muscles.

By the time you notice weakness with poly, (1997, remember?) you've already lost 50% muscle mass! I continued losing muscle till 2010, 13 years!, and now at 61 I wont be growing much new muscle. I'm permanently disabled, live on Vicodin, Humira, methotrexate, and sometimes roids.

The immune system isn't studied in depth in medical school. It's left for those that go on to a rheumatology internship. Despite elevated cpk and ANA, I tested neg for lupus, then the docs would give up. My rheumy diagnosed by history and brief physical exam alone!

I hope this helps others avoid similar medical mis adventures and suffering.

Edited by dthfytr
It's not always lupus!!!!!!!!!!!!!

I just now put the pieces together from lab work, symptoms and so fourth with lupus. I have a Dr appt today :)

You know I'm really glad you said we didn't learn much in Nursing school. Sometime I second guess my nursing capability because of knowledge I just don't remember learning. I mean understand we are all educators students advocated researchers and so fourth i just feel like with the issues I'm dealing with I almost had to look up most of it. Im really glad I'm not crazy in the rheumy knowledge feeling like i know nothing. School was great, but the more I'm out the more i realize they didn't really terach us much other than the basics.