Lupus flares and weight loss

Posted by Machak @machak, Oct 29, 2022

I am curious if anyone else has had weight loss associated with lupus/autoimmune flares. For the last year, though I am on high doses of steroids, any time I have a “flare” I start having rather dramatic weight loss. My appetite doesn’t change, diet doesn’t change (though I start craving meat on my Mediterranean diet), and I am so tired I sleep most of the time, but even with the limited activity I drop a few pounds every few days. The current flare is about 3 weeks old and I went from 198 to 180 lbs. Granted I have room to lose weight, but this is a bit crazy. It happens every time there is a flare, when I usually am at the highest steroid doses and would expect to be gaining steroid weight, Anyone else out there have similar experiences?

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Welcome, @machak. Lupus can sometimes cause weight loss or weight gain. I'm tagging fellow members who have experience with lupus, like @gingerw @jearanai13 @ejlm @debbybundy and @thunder_dog88 so they can share with you.

I can see where this weight loss would be concerning to you. Do you gain the weight back once a flare has calmed?

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@machak I was diagnosed with lupus back in 1988, and experience mild flares from time to time. For me, when there is a flare, I just don't feel like eating, no matter what other things may be going on. I do take a steroid dose once a week for another issue, and know that while some people experience a real appetite boost, I don't. Do the steroids give you "energy boosts" that might be counteracting maintaining your weight?
Ginger

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@gingerw

@machak I was diagnosed with lupus back in 1988, and experience mild flares from time to time. For me, when there is a flare, I just don't feel like eating, no matter what other things may be going on. I do take a steroid dose once a week for another issue, and know that while some people experience a real appetite boost, I don't. Do the steroids give you "energy boosts" that might be counteracting maintaining your weight?
Ginger

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Thanks, but no, it isn’t the steroids causing weight loss. Unfortunately Mayo just told me that since my Mayo rheumatologist passed away, I have to start over with new outside referrals, medical records review, getting permission to make an appointment, etc as if I has not been a Mayo patient for the last decade.

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