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loss didn't stop. My insurance isn't paying for Fresubin anymore, the German equivalent of Ensure. I'm at wit's end. I was told I would be placed in to the ICU and fed if I lose anymore weight. I told my Dr's that I'm unable to eat most of the time and that I'm convinced the Hydroxychloroquine isn't doing it's job anymore. Does anybody else have severe weight loss and can't gain weight?

December 21, 2025
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A MyLupusTeam Member

Active lupus also causes weight loss, Natasha. Has your thyroid function been checked recently, as an overactive thyroid causes weight loss, as does diabetes. A full set of labs is important to have updated if not done recently, as well as age-appropriate cancer screening. Depression, which is common with our stressful disease, can also cause weight loss. Has your doctor addressed these possibilities?

I have also been underweight at times, when my lupus is more active, and I try to eat more calorie-dense foods like nuts, avocados, and tahini at those times. Please keep us posted, and take good care of yourself!

December 21, 2025
MyLupusTeam

Are you experiencing severe weight loss with lupus and struggling to gain weight?

Your situation sounds incredibly difficult, and it's understandable you're feeling at wit's end. Severe, ongoing weight loss with lupus can happen for several reasons, and you're not alone in experiencing this.

Loss of appetite is actually a Show Full Answer

Are you experiencing severe weight loss with lupus and struggling to gain weight?

Your situation sounds incredibly difficult, and it's understandable you're feeling at wit's end. Severe, ongoing weight loss with lupus can happen for several reasons, and you're not alone in experiencing this.

Loss of appetite is actually a known side effect of hydroxychloroquine. Some people taking it experience gastrointestinal issues that make eating challenging, including:

* Nausea
* Vomiting
* Stomach pain or cramps
* Upset stomach
* Diarrhea

These side effects can make it very difficult to maintain adequate nutrition. Additionally, lupus itself can cause weight loss through abdominal pain, diarrhea, or poor appetite even without medication effects.

What MyLupusTeam members have shared:

A MyLupusTeam member mentioned experiencing weight loss on Imuran (azathioprine), with another responding that they lost weight but attributed it to reduced inflammation and increased movement as pain decreased.

Important next steps:

Given the severity of your weight loss and your doctors' concerns, it's critical to work closely with your healthcare team. They may need to:

* Evaluate whether hydroxychloroquine is contributing to your inability to eat
* Consider adjusting your medications
* Refer you to a dietitian for specialized nutritional support
* Explore other underlying causes

Your concern that hydroxychloroquine may not be working effectively anymore is worth discussing with your rheumatologist, especially given your ongoing symptoms and the timing after your baby's birth.

December 21, 2025
A MyLupusTeam Member
December 25, 2025

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