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A MyLupusTeam Member asked a question πŸ’­
Houston, TX

Here's more details... July 23, 2026 my rheumatologist ordered labs. The things that came back abnormal were dsDNA increased back to >300 from >180 from June 2026, c4 dropped from 3 to 2, c3 dropped from 93 to 78. Now my UPCR went from 179 to 479 in those same two months even though the number falls within normal limits. My egfr has went from 90 July 23, 2026 to 80 August 17, 2026 to now 70 as of August 21, 2026. My creatine went from 0.83 to 0.93 to 1.04 all in those same dates. And I get still… read more

August 23 (edited)
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Answer Summary

Members rallied around a member asking when worsening lupus labs and symptoms warrant an ER visit versus an urgent call to the doctor, with... Read more

Members rallied around a member asking when worsening lupus labs and symptoms warrant an ER visit versus an urgent call to the doctor, with the community consensus being that the ER likely won't help but pressing doctors for urgent appointments this week is critical. Several members emphasized the importance of becoming a 'squeaky wheel,' getting on cancellation lists, asking about adding CellCept or steroids to stabilize kidney function faster, and confirming that ACE inhibitors or ARBs are being used to protect the kidneys. A recurring theme was trusting your body, staying calm to avoid flares, and advocating fiercely for yourself when doctors seem to dismiss concerning trends.

A MyLupusTeam Member

Great. And please try to stay calm to keep the wolf in check. This is treatable, and you can definitely get through this!πŸ’œ

August 23
A MyLupusTeam Member

Thank you @A MyLupusTeam Member I am calling first thing in the AM, with all of this, to get on schedules this week!! πŸ’œπŸ’œ

August 23
A MyLupusTeam Member

Thank you for this reminder, I have the ability to get overwhelmed and anxious especially when I'm not being hard, seen, felt or taken serious. πŸ’œπŸ’œ

I for sure want to get back to baseline and remission!! Thank you so much πŸ’“

August 23
A MyLupusTeam Member

Empress, the ER won't do anything about this, but please be a squeaky wheel to see your doctors ASAP this week! Or, at the very least, to get some answers to your questions and an appointment within the next couple of weeks.

Baylor in Houston has a great reputation, and UT should have good specialists as well, I would think. Are you seeing doctors at one of these? I don't suggest traveling elsewhere, as you will face a long wait. I would let your doctors know that you are very concerned and ask whether adding Cellcept or steroids would help stabilize kidney function more quickly. Cellcept will take months to work, while steroids will begin to work much more quickly as a (hopefully) short-term measure to help stabilize you.

August 23 (edited)
MyLupusTeam

First β€” trust your gut. Your body is absolutely speaking, and the trend in your labs tells a story that "still within normal limits" doesn't fully capture. A downward eGFR trajectory (90 β†’ 80 β†’ 70 in less than a month), rising creatinine, a UPCR that nearly tripled, dropping complement levels, and rising dsDNA β€” together Show Full Answer

First β€” trust your gut. Your body is absolutely speaking, and the trend in your labs tells a story that "still within normal limits" doesn't fully capture. A downward eGFR trajectory (90 β†’ 80 β†’ 70 in less than a month), rising creatinine, a UPCR that nearly tripled, dropping complement levels, and rising dsDNA β€” together with visible foamy urine, unstable BP, increased joint swelling, and fatigue β€” that's a pattern, not a coincidence.

When to go straight to the ER β€” don't wait, just go:
- Severe chest pain or tightness
- Sudden shortness of breath
- Inability to urinate or dramatically reduced urine output
- Sudden severe headache with vision changes (can signal a hypertensive crisis)
- Fainting or extreme weakness
- Swelling that becomes sudden and severe, especially with breathing difficulty

When to call your doctor urgently (same day):
- BP readings that are significantly elevated or erratic
- Worsening foamy urine
- Increasing swelling in legs, feet, or hands
- Fatigue that's suddenly much worse
- Any new or rapidly worsening symptoms

Your situation right now β€” today β€” sounds like it warrants an urgent same-day call to your nephrologist, not a "wait and see." The speed of that eGFR drop is particularly worth flagging directly and clearly.

When you call, be specific. Say: "My eGFR dropped 20 points in under 30 days, my UPCR nearly tripled, and I have visible foamy urine with unstable blood pressure. I need guidance on whether I should be seen today."

Regarding switching your rheumatologist β€” that instinct sounds valid. Dismissing lab *trends* in lupus nephritis, especially with active symptoms, is a real concern. A good rheumatologist should be looking at the direction things are moving, not just whether a number crossed a line on a reference range.

A MyLupusTeam member shared: *"I've learned if you think something is wrong, just go to the emergency room. When you have lupus, anything could be happening to your body, and it's best not to take chances."*

That said, given your symptoms aren't yet at the emergency threshold listed above, the strongest next step is an urgent call to your nephrologist today β€” and document everything you shared here when you do.

August 23

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