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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

No matter what I eat I have the feeling I'm losing weight, most Drs don't seem to care, here's a picture of my arm:

A MyLupusTeam Member asked a question đź’­
Berlin Köpenick, DE
May 21
 · 
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Answer Summary

Members connected over the frustrating experience of unexplained weight loss with lupus, with many sharing that their doctors were not... Read more

Members connected over the frustrating experience of unexplained weight loss with lupus, with many sharing that their doctors were not initially concerned despite significant drops to dangerously low weights. Several members offered practical strategies that helped them gain weight, including drinking Boost or Ensure high-protein shakes between meals, having milkshakes after dinner, and tracking weight daily to know when extra nutrition was needed. A recurring theme was the emotional toll of feeling dismissed by doctors and judged by others, with members encouraging each other to keep advocating for themselves and get additional testing like thyroid labs.

A MyLupusTeam Member

Your arms look like mine. Has your doctor ordered any labs? I lost enough weight that I looked malnourished. My daughter has me drinking boost high protein drink in between meals and my son-in-law makes a milkshake after dinner. I've gained six pounds doing this. I'll keep you in my prayers 🙏. Love and hugs 🫂 🤗

May 21
A MyLupusTeam Member

I have to agree with Natasha you look like your loosing weight don't stop talking to your dr about it remember you have lupus and nobody believed you hope your feeling better soon

May 21
A MyLupusTeam Member

Hi Natasha, I’m sorry you’re having trouble gaining weight. Have you tried drinking Ensure with your meals? That’s what I had to do for a while. Hope everything improves for you. Take care💜

May 21
MyLupusTeam

It's really frustrating when you feel like something is wrong and it seems like no one is listening — that experience is valid and worth taking seriously.

Unintended weight loss with lupus can happen for several reasons, including:

- Poor appetite from lupus itself or medications like hydroxychloroquine
- Mouth ulcers making Show Full Answer

It's really frustrating when you feel like something is wrong and it seems like no one is listening — that experience is valid and worth taking seriously.

Unintended weight loss with lupus can happen for several reasons, including:

- Poor appetite from lupus itself or medications like hydroxychloroquine
- Mouth ulcers making eating painful
- Gastroparesis — where the stomach empties too slowly, causing nausea, fullness, and reduced eating
- Fatigue, depression, or anxiety reducing interest in food
- Abdominal pain or diarrhea interfering with nutrition
- Thyroid issues, which are a common lupus comorbidity A helpful step is keeping a symptom journal — tracking what you eat, how you feel, and any other symptoms. This gives your doctor something concrete to review and can make it harder to dismiss your concerns.

Asking for a referral to a dietitian is also worth pushing for, as they can help ensure you're getting enough calories and nutrients even when eating feels difficult.

Please keep advocating for yourself — weight loss in lupus is a real concern and deserves proper attention from your care team.

May 21
A MyLupusTeam Member

I'd definitely bring this up to your doctor and see what they say

May 23

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