my husband was diagnosed with MPGN in 1999 at age 22. He has been treated with prednisone, BP meds, ace inhibitors since diagnosis they now think it is C3G. I am looking for treatment options or those also treated with prednisone. Drs have concern about long term side effects of prednisone.
So far my husband has tolerated this treatment well.
Best,
Unfortunately, prednisone does have pretty serious risks with long term use. Some people have luck with other immune suppressants - Cellcept is common for C3G patients to try. The only treatment that works on complement is eculizumab or raviluzimab, which is extremely expensive and does not have FDA approval for C3G - so while it works well for some patients, it is very hard to get insurance approval for it. There are currently a couple of drug trials available, which might be a good option if he qualifies. Those drugs would be the most targeted therapies available for C3G at this time.
My best advice is to consult with one of the few nephrologists who have a lot of experience and expertise with C3G. That is the best way to make sure your husband is getting optimal treatment.
Thank you. Those drs are just so hard to find. He is getting re- biopsied here soon. His drs have said they've never seen someone do so well with prednisone for over 20 yrs. No serious side effects to date.
It has kept him pretty stable. We tried cellcept with prednisone last year. No real difference and he felt terrible.
Thank you very much for your wonderful input. Back in 2005, in retrospect I was misdiagnosed with Glummeral Membranous Nephritis. I was and was put on prednisone, steroids Cellcept and chemo at different times. I eventually went into renal failure in 2012 followed by 15 months of dialysis. After match testing my younger sister gave me a kidney and we were a six antigen match. After my transplant I noticed I was spilling protein in my urine so doctors performed a biopsy and compared the one I had in 2005. . It turns out that I always had 3CG. Since my transplant eight years ago I have had a serious of intermittent increase in creatinine and high levels of proteins in my urine. Consequently, I have had about 5 series of infusions of both Eucilizumb and Ravilvzimab. Following a series of infusions after about five months it did control my creatinine and urine protein levels.
I have always wondered if these two medication's would have been effective if they would've known my initial Diagnosis of 3CG and would it prevent me from having to have a kidney transplant? I go to Cedar Sinai in Los Angeles and they appear to be up on the latest protocols.
Thank you for sharing Didant and good luck in finding some answers.🙏🏼🙏🏼
And all the best to you Gardner22!!
My husband was also misdiagnosed after his first and only biopsy, in 1999, with MPGN 1.
About 2 years ago his nephrologist mentioned that MPGN didn't really exist and that the biopsy showed that he had C3G. That nephrologist has since retired and we have a new one.
Our new dr wants to re biopsy to confirm since it's been 20+ years. We are currently waiting for this new and 2nd biopsy to be scheduled. It is our great hope that it provides more insight for treatment and confirms an accurate diagnosis.
Wishing all the best for your husband to find answers for treatment options with a positive outcome !!'
Thank you, Gardner22! The best to you as well!! This forum has been a God send. What a wonderful community that shares and supports others.
We've felt so alone the past 20+ yrs.
Yes, the old MPGN categories are just outdated terminology.
Eculizumab & raviluzimab have stabilized some patients and stopped or slowed disease progression in native kidneys. If it is working now, it probably have worked for you. It worked well for my native kidneys for several years, but eventually began to lose effectiveness. In the years before your transplant, I’m not sure eculizumab was available yet, and if it was, it would have been very difficult to get it. I started it in 2015 and had to fight for 6 months before I got it. Raviluzimab did not exist yet.
Thank you for your valuable feedback. I think you're correct that there was no Raviliuzimab Available when I was sick with kidney disease. My transplant was in 2014 and afterwards they realized But I had been diagnosed correctly. It's never a good time to have a kidney disease but it would've been better if I would've had it later as I would've had more treatment options. Being treated for wrong diagnosis for 5 years with chemo and steroids was very hard to endure and it was for nothing
sorry, I noticed a typo I meant " I had been diagnosed INCORRECTLY"
