Connect
5yo boy with HSP Nephritis (Grade IIIa) maxed on CellCept
Hi everyone,
I am a father from mainland China, reaching out to this community to seek some guidance, shared experiences, or just some hope for my 5-year-old son, Tudou.
Background & Diagnosis
In October 2025, when Tudou was 4, we noticed tiny bleeding spots on his legs. He was soon diagnosed with Henoch-Schönlein Purpura (HSP). A month later, he developed severe abdominal and joint pain, and further tests showed kidney involvement. We took him to the Children's Hospital of Fudan University in Shanghai. Following a kidney biopsy, he was formally diagnosed with Henoch-Schönlein Purpura Nephritis (HSPN, Grade IIIa，Oxford Classification M0E0S1T0C0）, which is structurally classified under IgA Nephritis (IgAN).
Current Treatment & Medications
The medical team put him on a heavy regimen:
Prednisone (Steroids)
Benazepril (ACE inhibitor)
CellCept (Mycophenolate Mofetil / MMF)
He has been on CellCept for nearly 9 months now. He is currently at the absolute maximum adult dosage: alternating 4 capsules one day (2+2) and 3 capsules the next (2+1)—totaling 7 capsules every two days. The high-dose steroids have completely changed his physical appearance, which breaks my heart.
Our Current ChallengesOutwardly, Tudou is an active, curious boy. However, he sweats easily and is highly vulnerable to respiratory infections during seasonal changes. Every time he catches a cold or gets a fever, his urinalysis goes wild—showing massive occult blood, microalbumin, and proteinuria. His urine red blood cell (RBC) count once spiked to a shocking 2,000+.
Once the fever subsides, the numbers drop back down, but they stubbornly hover in the double digits. Our best microscopic exam result was in the single digits, but it never stays there. At our recent August follow-up, the doctor told us his protein and RBC levels are still not ideal.
Next Steps & My Questions
Our next crucial follow-up is in October. If his lab results do not show improvement, our doctor is considering switching him to a biologic injection manufactured in China called Telitacicept (RC18).
As a father, it is agonizing to watch my little boy endure so much medical intervention. I am reaching out to see:
Has anyone else had a young child on such high doses of CellCept for HSPN/IgAN? Did it take longer than 9 months to see stable remission?
Does anyone have experience with Telitacicept (RC18) or other biologics for pediatric IgA Nephritis / HSPN?
How do you manage or cope with the massive spikes in hematuria/proteinuria during viral infections?
Thank you so much for reading our story. Any advice, insights, or words of encouragement would mean the world to our family right now.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
@goldenhoo1023 I’m so sorry that your little boy is having so many medical interventions at such a young age.
Is your son able to play with other children or have them in the house? Becky
@becsbuddy He has been out of school and staying at home since last October. Although he finally started going back to kindergarten this September, the constant fluctuations in his condition and unpredictable colds or fevers force us to frequently pull him out of class to rest at home. As parents, we try our absolute best to protect him in every aspect of daily life—keeping him away from other sick children and constantly adjusting his layers of clothing to prevent any infections. When we first found out he had this illness, all we could do was weep in silence and heartache. Thank you so much for your kindness.
-
Like -
Helpful -
Hug
2 Reactions@goldenhoo1023, I can only imagine the heartache that you must be experiencing as parents and how much you want to protect your son. If you would like to consult with Mayo Clinic experts in Pediatric Rheumatology (https://www.mayoclinic.org/departments-centers/pediatric-rheumatology/overview/ovc-20479135), you may consider International Patient services at Mayo Clinic https://www.mayoclinic.org/international
There are also several hospital in China that are part of the Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Mayo Clinic has extensive experience in treating patients with serious, complex or rare conditions. Hospitals that are part of the Mayo Clinic Care Network can draw on the collective knowledge of Mayo Clinic through on-demand digital tools, multidisciplinary virtual discussions, one-on-one phone consultations (inpatient), and asynchronous electronic consultations (outpatient).
I'm also tagging @jsimmons74, who writes about her son in this related discussion:
- Damage to legs from Henoch-Schonlein purpura? Stumped the doctors https://connect.mayoclinic.org/discussion/teenager-damage-to-legs-from-hsp-stumped-the-doctors/
-
Like -
Helpful -
Hug
3 Reactions@goldenhoo1023
https://emedicine.medscape.com/article/984105-treatment
I’m very sorry to hear about your son’s illness and suffering. It sounds like he’s getting excellent care.
I don’t know if you can open the link above about a discussion about current treatment options.
Unfortunately, there is not one single path to cure. Each patient responds differently.
However, there seems to be a concern regarding prolonged high dose prednisone/ steroid use.
@colleenyoung shared important information in her post and I hope you take advantage of the opportunity to to get in touch with Mayo Clinic connected hospitals in China.
-
Like -
Helpful -
Hug
1 Reaction