Does anyone on here have glomerulonephritis?

Hi Jellybeans,

I have IGA nephropathy and although I can't be sure, I believe IGA nephropathy is a "type" of glomerulonephritis.

It's hard to say if this is likely to be a chronic or a temporary ailment.  However, what I can say is mine (IGA) is chronic, and ultimately led to kidney failure after 17 years.  You'll have to wait to see your biopsy results.

Regarding discovery:  it is not at all uncommon for someone to lose kidney function almost to the point of dialysis before becoming aware, so it's good that you're discovering this early.

In terms of protein in urine:  it's part of the disease, unfortunately, but I wouldn't "worry" about it, it's to be expected under the circumstances.  As for reduction:  there is nothing in your diet that can assist in reducing protein leakage.  You could try candesartan; it's a blood pressure medicine and it seems (?) to have also reduced my leakage over time.

I hope that helps (a little), and wishing you a positive diagnosis,

Hi jellybeans 

you sound exactly like my husband.  He has IGA nephropathy which is under the glomerulonephritis umbrella.  He had headaches and hypertension diagnosed about 9 years ago, then when the protein in his urine was discovered he was further investigated and a biopsy confirmed his diagnosis.  He had about 40% kidney function when diagnosed and is now down to 21%.  His is chronic and he was told he could have had it for 20 years prior to diagnosis and it was probably triggered by strep throat or a gut infection at some time.  At diagnosis they said he could be on dialysis within a year or so, but meds have delayed that and it looks like it could be in the next year or so.  With Simon they could say it was chronic when looking at the biopsy, it was to do with the damage already caused in his kidneys and the stage of CKD he was at already.   I think because he was a fit man who hardly ever went to the doctors, it kind of went against him as he wasn't diagnosed until it was well established.  Not sure if it could have had a better outcome if he'd been diagnosed a lot earlier.  He's 53 now by the way so not that old at diagnosis!  

Best of luck and let us know how you get on

kind regards

Mandy 

How did your renal biopsy go?  Did you use twilight medication?  I have pain in my right back area.  Thanks, heidi

My husband has been diagnosed with Membranous Glomulonephritis.  IGA Nephropathy is an unknown cause of a definite kidney disease.  Yes, it can cause MG.  This is exactly what happened to my husband.  With him they believe it is an un-known autoimmune of some sort that caused the 'secondary' MG.  He is on treatment now for 6 months to try and reset his auto immune as well as treat and maintain kidney function so they don't get worse.  Please be sure to contact your nephrologist because it is extremely important to treat before it gets worse.  This situation came about in a strange way.  Started Dec 2015 just not feeling good.  Anxcious, blood pressure going up, cholesterol going up and he always worked out at the gym.  January 2016 two DVTs (blood clots)  Didn't know cause, put on Eliquis at too low of a dose.  DVTs again in April.  Went to a University Hospital and through endless tests found out.... unknown autoimmune causing kidney disease "idiopathic nephropathy"... diagnosed with glomulonephritis...  long road... I can't express enough how important it is to find a good nephrologist.  They said his hypercoagulation (causing dvts) was a result of this underlying problem.  It is very confusing because we basically had to back pedal to find the cause, which turns out to be unknown.  Which is quite common.