brand new diagnosis

[ematthews81]

Hello! I’m brand new to all of this! Just diagnosed last night but doc still needs more labs to know more etc. a question that has come up for me while I’ve been researching is how do know what stage I’m in? The doc didn’t mention that last night when he told me the news. Another question, I’ve read that 50% of people diagnosed reach kidney failure within 10 years. What happens to the other 50% and those that do get there, does that mean dialysis air transplant? I start steroids and immunosuppressants tomorrow. Will I be on those forever? Any advice for any of this? I’m so new and I just don’t know what it all means. Severity, future, etc., etc., etc.

[linfuller Ambassador]

Hi,

Your labs should have a GFR value, which is used to determine the stage you are in. Patients who have kidney failure will need dialysis. Transplant may be an option, but that is complicated because there is currently no treatment available for C3G and the chances are very high that the disease will damage a transplanted kidney. You will not be on steroids forever, as there are significant risks of long term steroid treatment. The hope is that you will stabilize and be able to wean off of the steroids and just be on the cellcept to control the disease. This is sometimes successful for C3G patients, but sadly these meds are often not very effective for us. The hope is that there will be a targeted therapy for C3G in the next year or so. Until then, your doctors may try different immune suppressants in hopes of finding one that will keep you stable.