EXPERT EXPLANATIONS

[tineB63]

My 18 year old daughter was diagnosed with C3GN four years ago. She was initially treated with a steroid and Lisiniprol, which helped her eventually go into remission. She has since come out of remission and her Nephrologist is now suggesting Cellcept which apparently is mostly used for Lupus which she doesn't have. I am very anxious about a medication that supresses the immune system for fear of her contracting a virus that she will have no resistance to, especially as she will go off to College in September.

[Wizzi]

My son has a renal vasculitis and he has been on celltech for two years without big problems. At first he had dhiarrea and doctor gave him myfortic . Now is better. Every year he has flu jab . No virus or big problems: the important thing is that he could reduce steroid and he is in remission.

[AusTex77]

My husband is on cellcept for C3GN. And it has worked remarkably well. It calmed his overactive immune system. He is also on prednisone and Bactrim to help him from getting viruses. He did get shingles, but so far that is all. He is also on Lisinopril and gout medicine. All medicines seem to be doing their job. Hope this information helps.

[tineB63 in reply to AusTex77]

This is really helpful - thank you so much. My very best wishes to your husband.

[DavidF_NKF Partner in reply to AusTex77]

RESPONSE TO C3-GN QUESTION FROMAusTex77

Hi AusTx, this is the response from our C3G Expert Panel to the question you posed on research.

IN THE FUTURE, please post all questions in the Expert Explanations port of the site. Thanks!

Unfortunately, there are no treatments for C3G that have been proven to be effective at this time. The treatments that your daughter has tried are frequently used, and seem to be successful in some patients. Nephrologists frequently use lisinopril in patients who have kidney disease and protein in their urine. If she has protein in her urine now it is reasonable that she stays on this medication as long as she can tolerate it without side effects.

Regarding the Cellcept, you are correct that it is commonly used for lupus nephritis. It is also used to suppress the immune system in most kidney transplant recipients. There are reports that it is beneficial in some patients with C3G, and many of us do try this medication in patients with persistent disease. Because Cellcept has not been studied in this disease in randomized controlled trials, the treating nephrologist will have to use their judgement regarding the dose of the medication and how long to treat before concluding whether it has helped or not.

Cellcept is immunosuppressive, and it does increase the risk of infections. It can also have other side effects. Cellcept and lisinopril, for instance, cannot be used in patients who are pregnant. Nevertheless, many patients are treated safely with these medications for long periods of time. Certainly it is wise to reduce any unnecessary exposure to infections and to have all appropriate immunizations, but most patients can conduct their lives normally while on Cellcept. Close follow up with a doctor is important, however, to make sure the risk of infection is minimized and to determine whether the patient is improving in response to the treatment.

[DavidF_NKF Partner]

Hi tineB, Thank you very much for sending your concern to the Expert Explanation Feature! We have forwarded your concern to the C3G Expert Panel and a response should be available by 1 - 2 weeks. Please check the site periodically during that time.

[tineB63 in reply to DavidF_NKF]

Thank you David.

[DavidF_NKF Partner]

Hi tineB63, Here is the response from our C3G Expert Panel- I hope this answers your concerns:

Unfortunately, there are no treatments for C3G that have been proven to be effective at this time. The treatments that your daughter has tried are frequently used, and seem to be successful in some patients. Nephrologists frequently use lisinopril in patients who have kidney disease and protein in their urine. If she has protein in her urine now it is reasonable that she stays on this medication as long as she can tolerate it without side effects.

Regarding the Cellcept, you are correct that it is commonly used for lupus nephritis. It is also used to suppress the immune system in most kidney transplant recipients. There are reports that it is beneficial in some patients with C3G, and many of us do try this medication in patients with persistent disease. Because Cellcept has not been studied in this disease in randomized controlled trials, the treating nephrologist will have to use their judgement regarding the dose of the medication and how long to treat before concluding whether it has helped or not.

Cellcept is immunosuppressive, and it does increase the risk of infections. It can also have other side effects. Cellcept and lisinopril, for instance, cannot be used in patients who are pregnant. Nevertheless, many patients are treated safely with these medications for long periods of time. Certainly it is wise to reduce any unnecessary exposure to infections and to have all appropriate immunizations, but most patients can conduct their lives normally while on Cellcept. Close follow up with a doctor is important, however, to make sure the risk of infection is minimized and to determine whether the patient is improving in response to the treatment.

[tineB63]

This is really helpful. Thank you so much.

[DavidF_NKF Partner in reply to tineB63]

Your very welcome. Please don't be shy about asking more questions!