Glomerulonenephritis

[BonnyB]

Hi, does anyone have any experience of the above. After almost 2 years of going round in circles , having protein, blood and taking antibiotics it's now come to light that most of the time it's blood in my urine and not a infection. Gp advised me to speak to consultant because she says linked to SLE as i have an app in 2 weeks. Just want to get as much information as possible. Thanks in advance

[OldTed60]

I had same for years and still always have blood in my wee, sometimes also protein. I too went through all the tests with antibiotics but no answers and they finally they just blamed my autoimmune diseases, Systemic Sclerosis, Sjogren’s and hypothyroidism. I have since also wondered about hypermobile spectrum disorder I’m recently diagnosed and awaiting test results for - particularly the classical and vascular EDS plus other rare DNA. Maybe these could explain my random heavy bleeds including after surgical procedures.

I’m due to have colostomy surgery soon and would have liked to have this information prior but probably not to be. I do get spells of pain and discomfort in my bladder and always struggle to wee (retention) but no answers for this either as no inflammation showed on cystoscopy to suggest interstitial cystitis -most strongly associated with Sjogren’s I’m told. Was told my urethra entrance is tight due to .. GP thinking maybe systemic sclerosis. Mycophenolate has helped a lot with no more UTIs or kidney pain but not with my scleroderma gut - which the urology nurse thought maybe causing the bladder problems by full damaged bowel pressing on the bladder. Some things I’m resigned to never knowing what they are now.

[Sarah74]

I have lupus nephritis and have had it since I was 18, I’m now 50 and following a heart op have gone into renal failure.

Mine was first picked up in protein in my urine, has this been measured?

You also need your GFR and creatine levels measured and these are a clear indication of any damage to the kidneys

[Spanielmadlady]

I have Lupus Nephritis class v . It was initially picked up when a routine lab sick was off the scale but the only way to get a definitive diagnosis is by kidney biopsy. I had one in 2018. Rheumatology don't look after my kidneys a Nephroligist does. X

[Suvi8901]

Very sorry to hear about your “going around in circles “ without getting a definitive diagnosis for lupus nephritis (aka glomerulonephritis), a very serious manifestation of SLE (lupus). Frothy urine is a huge telltale sign of dysfunctional kidneys!👆

I was diagnosed with lupus nephritis in 2016 after DLE and SCLE but am now in lupus nephritis “remission”?!😳👆👏

Most important:

1. You need a lupus trained/experienced nephrologist/kidney specialist medical doc preferably at NHS consultant level. As a poster here said, a rheumatologist or GP will not do!

All the kidney function tests [blood and urine] must be done eg eGFR, creatinine levels, albumin levels etc etc

2. I had a kidney biopsy which gave a definitive diagnosis: numerous autoantibodies attacking my glomeruli (Ref. “a full house of speckled cells shown up by ELISA immunoassay” ref, nephrologist letter) [ELISA= enzyme linked immunofluorescence spectroscopy assay] confirmed lupus nephritis class 5

3. Was immediately prescribed oral Prednisolone (a corticosteroid) starting @40 mg/day reducing gradually to 10/15mg/day over 4months. Also prescribed 3G MMF/day= 3000mg/day= six 500mg tablets/day! MMF=Mycophenolate Mofetil. Within a week I was feeling hugely better. Urine much less frothy. Sleeping better, less tired. I’m now on 1000mg MMF/day and NOT on any oral steroids.

Declined iv new biologic treatment at the time eg Rituximab. It was too experimental and opted for MMF which I’ve read works very well particularly for lupus nephritis.

I feel your medical team needs to wake up, wise up and get you that biopsy!

You should be having treatment for lupus nephritis without all this faffing around and unnecessary delays. This unchecked/untreated inflammation of the glomeruli filtration units within the kidneys can’t go on like this!👆

No apologies for being blunt but we have to push! 😳🙄🥹

BW and keep well!

[Florence91 in reply to Suvi8901]

Well put Suvi. Mine settled down after a long time and steroids. I'm 79 now and reasonably well hut immunology and kidney biopsy crucial in diagnosis

[Betty909090 in reply to Suvi8901]

Excellent info for lupus nephritis! Thanks.👏👍

[BonnyB]

Thank you so much everyone. I've felt really rubbish and still struggling but wanted to quickly acknowledge your replies as I have read them.It's been a long day today at hospital but in short my consultant does not think it nephritis.

He has said there's a consistency higher than normal white blood cell count in urine but when it's sent for testing it doesn't grow.

Hes writing my gp for them to refer me to urology or gynecology.

I'll keep you posted x