Lupus nephritis Grade IV...... Proliferative

[Drakula]

Kidney biopsy in match 2012 confirmed lupus nephritis Grade IV.

When I was diagnosed, initially my nephrologist prescribed me 'endoxen' which is cyclophasmide for 5 months and then after few months the doctor shifted me to corticosteroids(nucort 16) for 6 months. During this period my renal function was stable with gfr around 60 and creatinine 1.8

But from last 5 years, my nephrologist is only advising me to take BP medications along with diuretic tablet.

And during this time, my creatinine and urea level is on continuous rise.

The creatinine in now 2.85 which was stable from 1.7 to 1.8 between 2012 and 2014.

After they stopped cyclophasmide and then corticosteroid, my creatinine has continuously increased. It has increased from 1.8 in 2014 to 2.2 in 2015, 2.5 in 2016, 2.7 in 2017 and now 2. 85.

I am not sure whether my lupus is in remission or it has flared time and again during this period.

I am studying lot of literature on internet regarding lupus nephritis and it has surprised me that almost all literature focuses on the use of corticosteroids, immunosupprents in the treatment of lupus nephritis but my doctor has not prescribed any of these in the last 4 years even when the creatinine is on continous rise and gfr is continuously declining.

My nephrologist seems not much concerned.

He told me that I will end on End stage renal disease after few years.

Am I doing right?

Or should I seek second opinion from some other nephrologist?

Waiting in anticipation.

Thnx in advance

[Hidden]

You absolutely need a second opinion. I am really concerned that your nephrologist seems to think that end stage Renal failure ( which means dialysis ) is a foregone conclusion.

You need to ask if the continued deterioration in kidney function is due to the Lupus and why it isn’t being treated. We need to be our own best advocates.

[Drakula in reply to Hidden]

Yes he says that this is ckd

And the progression can only be delayed to some extent but it is inevitable

[overnighthearingloss in reply to Drakula]

What country are you based in? It may be helpful in finding good local consultants.

[Drakula in reply to overnighthearingloss]

I am based in India.

I am seeing one of the best Doctor who is practicing in leading hospital of the country.

I am unable to understand the reason behind his choice of treatment.

He has only prescribed BP medication along with diuretics.

When I asked, he told me that he is expert in non steroidal treatment.

But this is not helping me as my creatinine level is on continuous rise which indicates significant decline in gfr.

I am planning to take second opinion from any other doctor.

My gfr has decreased to 28 and he told be that I will reach end stage renal disease after some time.

I am really very scared.

[overnighthearingloss in reply to Drakula]

I can see from your replies that you are scared.

Unfortunately I don't have any information regarding good doctors in India.

I haven't been diagnosed with lupus nephritis but did have a renal crisis almost 10 years ago that almost put me onto dialysis. But I slowly managed to regain some kidney function so sometimes things can be reversed.

Biggest things I have done are..

Ensure I am always well hydrated.

Not use salt in cooking.

Obey the call of nature. Go when your body tells you to.

Eat very little processed foods these days.

Increased my vegetable intake so overall my protein from animal products is lower.

I believe these changes have been beneficial for me. But the right treatment is also essential. Maybe one of the admin team can advise on contacts in India? So you can get a second opinion from a good doctor with knowledge of lupus nephritis.

But don't panic. You are doing the best thing in trying to gain knowledge of your condition. That knowledge is never wasted.

[Drakula in reply to overnighthearingloss]

Thnx for the concern.

It would be very generous if someone helps me with the name of any doctor who is expert in treatment of proliferative lupus nephritis.

I am really veey scared.

I am trying my best to stabilise my kidney function but my doctors choice of non steroidal treatment is not helping my cause.

[overnighthearingloss in reply to Drakula]

I was hoping that someone in admin may be able to help you in that respect. I thought maybe they may have more far reaching links.

Maybe someone will still come up trumps for you if admin are unable to.

[Paul_Howard Partner LUPUS UK in reply to Drakula]

I'm afraid that we do not personally know any lupus specialist consultants in India, but there are a couple of lupus advocacy groups in your country who may be able to recommend someone;

Lupus Awareness India

facebook.com/groups/1236397...

Lupus Initiative Kolkata

facebook.com/lupusinitiativ...

[MOOG144]

Hi Drakula

I was diagnoised with Lupus Nephritis in March, my Rhymatologist is not going to settle for anything less than remission. He has fought for me to receive both the standard steroid, imnunosuppresants and now also Rituximab.

Definitely fight this as mine was stage 4 and with luck I will get to remission with very little permanent damage to my kidneys.

Good luck xxx

[Krazykat26]

Hi Drakula

With many of us more than one doctor is required to manage various symptoms all associated with lupus..for instance rheumatology will usually be the main speciality looking after lupus..dermatology for discoid lupus etc. As Moog said rheumatologists are the most knowledgeable about lupus as autoimmune disease and generally lead the medics and they liase with others involved in your care eg dermatologist, GP etc. I'm in UK so have no idea about medical care in India but I'm thinking that u might be able to get a referral to a rheumatologist..u may have better result and a more positive outlook and your nephrologist n rheumatologist can find the best way to manage your care xx

[1sam]

I am sorry that your nephrologist is not doing his best job. I totally suggest you to see another Dr who is willing to give you standard treatment for Lupus Nephritis.

I was diagnosed with Stage I in 2016 and my kidney function is better now than then, I'm on Cellcept (inmunosuprrssant) and Methotrexate.

I used steroids for 1 year.

I hope you get a better treatment soon.

Best wishes.