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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.

I think my sle is causing muscle loss combined with losing my appetite 2 bites in and almost never hungry. Anyone else been down this road?

A MyLupusTeam Member asked a question 💭
Southeast Missouri

Had chronic vomiting and pancreatitis before Sle diagnosis, no issues that cant be held at bay with daily Protonix, plaquenil, and low dose Prednisone. I learned my lesson about the sun... Let's not relive that.

I'm losing weight, foamy urine, no appetite and when I eat, I eat less than a picky child. Just had thyroid and Testosterone and vit D checked, low dose D3 supplements suggested.

What other hormones or interactions or type of flare up is this? I may be a bit depressive and anxious but… read more

2 days ago
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A MyLupusTeam Member

The foamy urine is concerning for possible kidney trouble, so please have this checked by your doctor, Jason--asap. With your weight loss, have you had general labs checked? As a physician, your symptoms concern me for a possible lupus flare, possible chronic pancreatitis (which is usually accompanied by chronic pain and diarrhea), elevated blood sugars, or a thyroid disturbance, to mention a few possibilities. A good physical examination is also worthwhile, in addition to ensuring that you're up to date on recommended cancer screening for your age.

I have also had loss of appetite with flares, and this is common. Lupus flares (especially organ flares) may cause loss of muscle, as may prednisone, though low doses will usually not cause it. Please see your doctor, and keep us posted.

4 hours ago
MyLupusTeam

What could be causing appetite loss, weight loss, and muscle wasting with SLE?

These symptoms together — especially the foamy urine — are worth taking seriously and flagging with your rheumatologist soon. Foamy urine can be a sign of lupus nephritis (kidney involvement), which can also contribute to weight loss and muscle Show Full Answer

What could be causing appetite loss, weight loss, and muscle wasting with SLE?

These symptoms together — especially the foamy urine — are worth taking seriously and flagging with your rheumatologist soon. Foamy urine can be a sign of lupus nephritis (kidney involvement), which can also contribute to weight loss and muscle wasting.

Here are several things that could be contributing:

- Hydroxychloroquine (Plaquenil) — loss of appetite is a known side effect, especially in the early weeks/months
- Prednisone — while it usually increases appetite, many MyLupusTeam members report the opposite effect
- Active lupus flare — lupus itself can suppress appetite and cause weight loss
- Depression/anxiety — even high-functioning depression can reduce appetite; studies show nearly half of people with depression experience decreased appetite
- Mouth ulcers — about 25% of people with lupus develop these during flares, making eating painful and unappealing Beyond thyroid, testosterone, and vitamin D, it may be worth asking your doctor to check:

- Kidney function panels — especially given the foamy urine, which can indicate protein in the urine (proteinuria), a red flag for lupus nephritis
- Adrenal function — long-term prednisone use can affect adrenal hormone production
- Inflammatory markers — CRP and ESR to assess whether a flare is active
- Nutritional deficiencies — B12, iron, and folate can all affect energy and appetite

A referral to a dietitian who understands lupus could also be really helpful for finding ways to get enough calories and protein even with a tiny appetite — protecting muscle mass matters a lot here.

Don't stop or adjust Plaquenil or Prednisone on your own. Stopping prednisone abruptly can actually worsen appetite loss and cause serious side effects. Work with your rheumatologist to taper safely if needed.

The combination of symptoms you're describing — especially the foamy urine and muscle loss — really warrants a prompt conversation with your care team rather than a wait-and-see approach. 💛

2 days ago

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