Diagnosed with C3 Glomerulonephritis

[Abdelmalak]

I'm 61 yrs Female, i was diagnosed with high blood pressure from about 15 years, and i was taking medicines and the pressure since that time became stable, in 2021 i was diagnosed and Confirmed with CLL Stage 1 and no treatment till now started as per my doctor recommendation since it was stable and no remarkable progression. lately in may 2022 my serum creat. was 1.14 then in few weeks became 1.4 mg/dl with Alb/Creat ratio 2.5gm/g, i went for a renal biopsy and diagnosed with C3 Glomerulonephritis, i need to know if there's any treatment to stop the progression to prevent reaching ESKD.

Is it a Chronic or Acute Disease ?

is it a must to reach the End Stage and go for Dialysis or things can be Stable specially with age above 50's ?

[DavidF_NKF Partner]

Hi Abdelmalak,

I apologize for the long delay in our response to you questions. Here is the Expert Panel's reply:

In recent years, it has become clear that C3 glomerulonephritis is associated with some types of hematologic malignancy, particularly in patients diagnosed after the age of 50. Although there is no specific treatment for C3 glomerulonephritis yet, there are several strategies for slowing the progression of the disease, such as rigorous control of blood pressure, and these should be discussed between the patient and nephrologist.

If a hematologic abnormality is detected, there should be discussion between nephrologist and hematologist on whether the two are related and whether treating the hematologic abnormality would be appropriate therapy for C3 glomerulonephritis.

C3 glomerulonephritis is a chronic disease, that typically needs to be monitored long-term.

The progression of C3 glomerulonephritis is variable among patients, and some patients remain stable. Unfortunately, it is difficult to predict who will progress, which is why most patients require close follow-up with a nephrologist.

Thank you for your question, we wish you the best of luck.

[Abdelmalak in reply to DavidF_NKF]

Thanks Mr. David for your reply;

I went on prednisolone 20mg once per day and Myfortic 360 twice per day for 6 months in addition to some high blood pressure treatment like irbesartan twice daily and the effect was good

The Albumin creat ratio went from 2600mg/g to 800mg/g and serum creat went from 1.46 to 1.1.

Unfortunately when my doctor saw that things are stable he went on decreasing the prednisolone gradually from 20mg to 10mg

But while following up we found that proteinuria jumped to 4700mg/g and high RBC’s in urine 80-85

He returned the prednisolone back to 20 and asked for another urine test after one month.

Note: ecoli infection returned back from time to time even after treating with antibiotics

[Gardner22]

Hi Abdelmalak,

Thanks for sharing . I'm very sorry you're going through this. I also have the same disease that came back on my transplanted kidney. My Care is at Cedar Sinai medical center in Los Angeles where I actually got the transplant. I've been pretty stable for eight years. However, when my urine protein and creatinine become high and I have symptoms of fatigue and swelling I get infusions of Rituxun The infusions only require 2×2 weeks apart . If you have any questions feel free to write back. Wishing you only the best!

[Bethrites in reply to Gardner22]

I wonder if you might be interested in being profiled about your experience with C3 Glomerulonephritis for Health Central.com? I am a writer with the website and am searching for someone to profile for a new guide to C3G designed for people who have been recently diagnosed. I can send you a sample of a patient guide to give you a sense of how we cover medical topics like this. Here's my personal website just so you know I am for real! Thanks for your consideration! bethhowardwriter.com

[Gardner22 in reply to Bethrites]

Yes, I would be very interested.

[Gardner22 in reply to Bethrites]

I would love to see one of your patient guides. Thank you!

[Bethrites in reply to Gardner22]

Thank you! Here is a link to a profile I wrote of a person with chronic migraine for a patient guide: healthcentral.com/article/c...

If you send me an email, I can send an entire patient guide to you -- I don't see any way to attach a file to this platform. I am at [e-mail]. Please let me know how we can connect! Best, Beth

[Bethrites in reply to Gardner22]

This will be our first patient guide on C3G so I don't have one of those to show you, but here is one we recently did on kidney cancer to give you a sense of the format and the profiles.

healthcentral.com/collectio...

Thanks!

Beth

[Gardner22 in reply to Bethrites]

Hi Beth,

I very much enjoyed your patient guide on kidney cancer. Since C3G is a relatively new diagnosis with not much information, I would very much like to help in anyway. I'm here to be of service so let me know what I can do? Back in 2005 I was misdiagnosed and on put medication's that would never work until I went into kidney failure. Following,I went on dialysis which is very challenging. My younger sister was an angel to offer her kidney and we were a six antigen match, better than twins Then shortly after my transplant I realized that something was wrong so they performed another biopsy and then diagnosed me with C3G. My dream of having a healthier came to an end, but I have always been hopeful and very diligent about following through with the proper kidney regime as recommended by my doctors. I have put much effort in learning about the disease and treatments .I would like to support people with this disease and also learn about viable treatment options.

Thank you very much for reaching out and I look forward to speaking with you.

Zorine Hall

[Bethrites in reply to Gardner22]

Thank you! I am eager to talk to you. I'd like to set up a phone interview. Can you email me and we can set up a time? You can reach me here: [e-mail]

I look forward to speaking with you and hearing your story!

Best,

Beth

[Abdelmalak in reply to Gardner22]

Hi Gardner

My case now

I went on prednisolone 20mg once per day and Myfortic 360 twice per day for 6 months in addition to some high blood pressure treatment like irbesartan twice daily and the effect was good

The Albumin creat ratio went from 2600mg/g to 800mg/g and serum creat went from 1.46 to 1.1.

Unfortunately when my doctor saw that things are stable he went on decreasing the prednisolone gradually from 20mg to 10mg

But while following up we found that proteinuria jumped to 4700mg/g and high RBC’s in urine 80-85

He returned the prednisolone back to 20 and asked for another urine test after one month.

Note: ecoli infection returned back from time to time even after treating with antibiotics