Lupus nephritis?

[Bonnie39]

Low GFR, and visible and then microscopic blood in urine. Cystoscopy and CT scan clear. Thrombotologist thinks may be a microscopic breakdown of kidneys caused by SLE and recommends a referral to nephrologist. Possible kidney biopsy on cards according to her. Can anyone tell me if lupus nephritis would be unclear from these tests or if there is some other cause? She suggested that my kidneys may not be working at a more microscopic than gross level. I'm back at my GP Tuesday and would like to have some ideas of things we may discuss. Don't much fancy a kidney biopsy, but if it directs the most accurate medication for me then I will have to be brave!

[Hidden]

Hi Bonnie39,

I'm afraid that a kidney biopsy is probably inevitable. Tests like cystoscope, CT scans, IVP's etc will show up things like tumours, renal calculi etc but don't show what is happening to the tissue in your kidney at a microscopic level. U&E's and eGFR blood tests are an indicator of renal function and don't identify the underlying illness causing the dysfunction.

There are many causes of poor renal function, nephrotic syndrome and vasculitis for example as well as lupus nephritis.

Good luck with your GP appt.

Best wishes

[Purpletop]

If you remember that our kidneys are like very fine sieves and that lupus creates a lot of debris (all those antibodies that die attacking or 'eating' cells in order to clean up) and that the debris is larger than the 'holes' of the sieve (I.e. the kidney), you then realise that at some point those holes become clogged and the sieves stop working as efficiently as before. As it takes a while until that happens, blood tests are unable to detect this until that is quite advanced (which is lupus nephritis). At that point everything becomes an emergency because kidneys are very close to

failing but to prevent that, the only way to determine how "clogged" they've become is to take a sample of the tissue, I.e. biopsy.

We each have our preferences when it comes to treatment and tests - personally I'd rather get a biopsy done now and see what state the kidneys are in, so I can start treatment that stops them worsen, than wait until is too far advanced and then hope that when I'm going to A&E those doctors (mainly juniors) will understand the need for speed and find the right medication.

But that's me - I'm not at all optimistic when it comes to the capacity of this disease to create havoc. And I would also like to add that I haven't yet had lupus nephritis, so you will need to hear the advice of those who had it to get a balanced view.

Fingers crossed, you caught whatever it is sufficiently early to get it reversed.

[tremarel]

Arh don't worry about kidney biopsy it's nothing to worry about & they will get a better picture of what is going on. I've had my kidney transplant 18 years now caused from the lupus. Best of luck hope they sort you soon x

[Natura]

I had blood in my urine...I have multiple UTIs all year long, which my kidney doctor speculates is why I have kidney scarring on both kidneys. Found out thru a sono, not painful.. Is it necessary to do a biopsy? My kidney dr also said the scarring was not gad and that the kidney will recover and be fine. I was fortunate to not have too much damage. Are your kidneys not working? What r your symptoms? I am new at this, so I apologize. I thought my kidneys were damaged from lupus, but the kidney dr told me it was most likely the common UTIs I get. Hope this helps.

[Bonnie39]

I have had a cystoscopy and CT scan which showed no obvious signs of growths or damage. The current thinking is that the function is being damaged at a microscopic level due to SLE. I have been passing blood for 6 weeks now. For several years I have had monthly UTIs (a week before period every month) but only occasionally bled from them.

I would rather avoid a biopsy if possible but thrombotologist and GP (seems up to speed on SLE) thinks this will be wisest course of action prior to starting any other long term medication. Unfortunately.