Rare case of renal limited lupus nephritis class IV

[Drakula]

Hello members

I have a query.

Healthcare practitioners in my country are confused regarding the diagnosis of my renal disease. In 2012, after kind biopsy, the diagnosis was of lupus nephritis class 1V. But all the blood reports ANA, ANCA, Anti DNA are persistently negative till date.

I didn't receive any standard treatment of lupus in last 8 years ( no steroids and immuno suppressant drugs)

But last few months, kidney function suddenly started deteriorating. Repeat kidney biopsy is again not very conclusive but it indicates renal limited lupus nephritis.

My nephrologist is of opinion that such cases are very rare as the lupus affects many body parts but in my case, it has only affected the kidneys.

My nephrologist has prescribed oral presnisolone 60 mg daily along with heavy dose of immuno suppressant drug Endoxen which is cyclophasimide. I have also received 3 days course of 500 mg methylprednisolone.

In these strange times of Covid, I am going through lot but the good thing is kidney function has started showing improvement after all these drugs.

But I am very concerned about the toxicity of these drugs. I am weekly getting blood reports to monitor the progress and the platelets are continuously decrease after starting all these drugs. Even Total serum protein is now below the normal range.

The good news is gfr improved .

Suggestions needed.

[KatieRL]

Hi Dracula. well I must have something very similar to you. I was diagnosed back in the early 80’z with SLE and it affected my kidneys only. To this day, it’s still just my kidneys. I was lucky to be a patient of Prof Graham Hughes who discovered Hughes Syndrome. I was affected by it for 3 years only. but still take 75mg Asprin to prevent clotting.

I was treated with a combination of toxic drugs, one of which was Pred. and it kept my kidneys stable for a long time. Unfortunately renal disease sometimes means taking medication which is challenging but if you are unsure of anything please do contact your renal team as they know you best and will be able to reassure you, but in the meantime do try not to worry and trust your doctors! xx

[Drakula in reply to KatieRL]

Nice to connect with you @KatirRL

If you don't mind, would you please share your average egfr during these years?

[Drakula in reply to KatieRL]

Also tell about your ANA and anti Ds DNA results?

Were they positive or negative?