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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.

Due to Leukopenia, his CellCept was decreased from 3,000mg to 2,000mg but now there's more protein in his urine again. Now what?

A MyLupusTeam Member asked a question 💭

My husband has nephritis class 5, CKD 3b. Docs had to decreased his CellCept because he got leukopenic, but now the albumin in his urine is increasing and the leukopenia has actually gotten worse. He's on CellCept, HCQ, Prednisone, and Lupkynis (and various other meds for hypertention, gerd, etc). We see the nephrologist on Friday but ... Now what? Any thoughts?

September 24
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Answer Summary

Members rallied around a caregiver asking what options remain after her husband's CellCept had to be reduced due to worsening leukopenia and... Read more

Members rallied around a caregiver asking what options remain after her husband's CellCept had to be reduced due to worsening leukopenia and rising urine protein. Several members offered helpful suggestions, including exploring an increase in Voclosporin dosage, and noting that Benlysta and obinutuzumab are also proven options for lupus nephritis, while one member shared that a drug interaction with diltiazem had to be addressed first. A deeply emotional theme ran through the thread, as one member shared her own scary hospitalization after being under-treated, reinforcing the community's message that self-advocacy matters and that no one faces lupus alone.

A MyLupusTeam Member

Praying from my hospital bed for your husband 🙏🏾 💜 this is a lot girl, and you are so strong to support him!! 🙏🏾 I love what @A MyLupusTeam Member said

October 3
A MyLupusTeam Member

We saw the Nephrologist. Now waiting on rheumatologist.
@A MyLupusTeam Member He can hopefully slightly increase his Voclosporin but he had to get off diltiazem because of a drug interaction (it's been a process).

September 27
MyLupusTeam

What a stressful situation — managing lupus nephritis is already complex, and when treatments start working against each other, it can feel overwhelming. It's really good that the nephrologist appointment is already on Friday.

Here's some helpful context going into that appointment: About the CellCept and leukopenia Show Full Answer

What a stressful situation — managing lupus nephritis is already complex, and when treatments start working against each other, it can feel overwhelming. It's really good that the nephrologist appointment is already on Friday.

Here's some helpful context going into that appointment: About the CellCept and leukopenia situation:

Leukopenia (low white blood cell count) is a known side effect of CellCept, which is why the dose was reduced. However, reducing it has allowed more protein to spill into the urine, suggesting the kidneys need stronger immune suppression.

The tricky part is that the leukopenia is still worsening despite the reduction — which is something the nephrologist really needs to investigate further. About Lupkynis in the mix:

Since he's already on Lupkynis alongside CellCept and prednisone, this is actually a combination specifically designed for active lupus nephritis. Lupkynis is monitored closely through kidney function (eGFR) tests and blood pressure checks.

One important note — Lupkynis itself can also cause kidney-related side effects, so the nephrologist will likely review his eGFR closely. Questions worth raising on Friday:

- Could the worsening leukopenia be related to Lupkynis or another medication rather than CellCept alone?
- Is switching to Myfortic (a longer-acting form of mycophenolate) an option, as some people tolerate it differently?
- Are there other immunosuppressant options that might better balance kidney protection with white blood cell levels?

A MyLupusTeam member shared: *"I cannot stress enough how important it is to take the medications prescribed by your rheumatologist, listen to your body and transition off temporary medications as soon as possible."*

Hang in there — Friday's appointment is the right next step, and going in with specific questions will really help.

September 24
A MyLupusTeam Member

@A MyLupusTeam Member

October 8
A MyLupusTeam Member

@A MyLupusTeam Member Awww friend!! 💜 You don't even know me and you missed me and are praying for me?! Even in your caregiver role for your husband, you're compassionate for others, that's so beautiful, and i have deep gratitude for you. That's the lupus family right there 🥹 It was a scare for real, but God kept me and I'm still here fighting 🙏🏾 Thank you for holding me up in prayer, I felt it! 💜🦋 You got this, I got this, we got this! 💜

October 5

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