My name is Junior. My 18 year old brother was diagnosed a year ago with C3 Glomerulonephritis. Over the past year we have been moderating his BP with lisinopril. As well as high doses of cellcept and prednisone to try and moderate his immune system. Based in his recent biopsy there are no signs of remission although his disease hasn’t progressed very much. His doctor wants to do a round of Rituximab infusion. We aren’t necessarily clear if that’s the best course of action due to the scary side effects. If anyone has done a blood(rituximab) infusion. My family and I would love to get your perspective and any words of advice. Also, is it fair to get a second opinion from a different nephrologist? We are located in Utah and we are open to suggestions. Thank you and and I’ve been reading a lot of the posts on this support group. I hope that each and one of you get the help you need. Thus journey is tough and there is such little information on this topic. This network is such a blessing.
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Hopeforc3g
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I'm a 40 year old male and I was recently treated with Truxima (Rituximab) for C3GN and I haven't had any side effects. I received my first two infusions, two weeks apart, starting in November 2021 and I recently completed the first of another two infusions that will be completed by the end of May.
I was previously on 2000mg of Cellcept daily for over two years starting in 2017 and had several side effects such as insomnia, extreme weakness, fatigue, and irritability. My autoimmune disease went into remission for about a year but flared up again recently. I was looking for other options since my experience with Cellcept was so miserable. I'm glad I made the decision to try Rituximab because my kidney function has shown slight improvement and my daily life is much more enjoyable since I don't have to deal with all the awful side effects of cellcept. If your brother is responding well to Cellcept and isn't having side effects that greatly affect his daily life I would continue using that for treatment. If not, I would strongly consider the Rituximab infusions.
Thank you for your thoughtful response. Cellcept didn’t cause my brother a ton of side effects but after a year of being on the immunosuppressant we haven’t really seen improvement, but we also haven’t seen his condition flare up. I guess it’s been sorta stable, and we’re not really sure why it’s progressed so little but we are grateful for that. The game plan is to try every potential drug out there that could potentially put him in remissions. If you don’t mind me asking, were you in remission prior to the rituximab treatment?
Again, thank your for your response and I hope everything continues to go well with your treatment!
I was no longer in remission when the rituximab treatment began, but I was believed to be in remission for several years before I began treatment since my GFR was stable. I've heard that if cellcept is discontinued and started back up again, there's a strong chance that the drug will be ineffective in treating the disorder. I was never given an option of taking both rituximab and cellcept at the same time. Has your brother's GFR and protein in the urine improved? Has the GFR been stable? Based on medical studies I've read and my initial treatment plan, it's best to wait up to 18 months before tapering off of cellcept.
Here's some of my GFR data. My GFR was in the high teens to low 20s when I was first diagnosed in 2017 and my treatment took about 6 months before I reached a high GFR of 49. Please ask more questions if there's something I can help with.
Here is the response from our Expert Panel. I hope this answers your question.
Thank you for asking this important question. Unfortunately, there are no treatments of proven benefit in C3 glomerulopathy. Nevertheless, because this disease is so serious, we often treat patients with drugs that are beneficial in other forms of glomerulonephritis. The medications that your brother has already received are frequently tried. They seem to help some patients, although we do not yet know for sure that they are beneficial. Similarly, rituximab has also been used successfully in other forms of glomerulonephritis, so some physicians have tried it in C3 glomerulopathy, but there is not yet enough data to know whether it is beneficial. Your concerns about the possible risks of the drug are reasonable, and the risks/benefits of this treatment should be discussed in depth with your brother’s nephrologist.
In terms of getting a second opinion, it is always worth hearing the perspectives of different physicians. This is even more true in a disease like C3 glomerulopathy. Because it is so rare, not all nephrologists have cared for these patients. If your brother does seek out a second opinion, therefore, he should feel comfortable asking the doctor whether he has previously seen patients with C3 glomerulopathy and feels comfortable treating this disease.
Finally, your brother may also want to speak with his nephrologist about whether he's eligible for a clinical trial which offers the possibility of new therapies for C3G."
Thank you for your response. I appreciate you bringing this question to the expert panel. We will certainly follow up with his nephrologist and try to get a second opinion.
Do you know where I could find more information about potential clinical trials for C3G ?
I hope all is well. I would like to recommend a clinical trial that I am starting in NYC. To my understanding, there are a lot of host sites for this clinical trial in the US.
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