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Renal limited lupus nephritis.

Drakula profile image
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Hello members of this wonderful community.I have a news to share. Today I received the results of my latest labs. Gfr has improved . I am under huge dose of medications which includes Prednisolone and immuno suppressant drugs for my renal limited lupus nephritis kidney disease,

But my serum albumin and total protein level is now well below the normal range.

I ean to ask does the low serum albumin and improved gfr has any relation?

Anyone having any idea about the low serum albumin and improved gfr?

Current medications includes 60 mg Prednisolone and 100 mg Cyclophasmide .

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Drakula
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WinterSwimmer profile image
WinterSwimmer

It will take time for the serum albumin to come up. Until it does you are at increased risk of DVT (I hope they have told you this - but if not, don’t panic - just know you need to take any severe pain in legs or arms seriously). Last year, in a flare, my albumin fell to 22 (middle of May) - and at the end of May I had a DVT. With mycophenolate it came back to 42 by September (my nephrologist’s ‘safe zone’ benchmark).

Are they giving you blood-thinners - I had self-administered heparin injections for 6 months. The whole episode was a blooming nuisance - and I still have some post-thrombotic pain.

Good luck and hope yours comes up quickly.

Drakula profile image
Drakula in reply to WinterSwimmer

No blood thinners for me...

Around a month back after my kidney biopsy, my nephrologist started my treatment with 60 mg Prednisolone and 125 mg cyclophasmide, the platelets came down the normal range but now it is again just above the normal range .

I am having weekly blood and kidney function tests to monitor the progress .

Freckle1000 profile image
Freckle1000

Don't quote me on this but GFR is a general measurement of kidney function and high protien leak ( or low albumin - are the by products kidney disfunction.

You're on nearly exactly the same dose of medications I was on when I was 14 and possibly in a similar predicament - and those drugs well and truly did the trick - it took about a year and a half of taking those doses before things settled and now my kidneys are still plugging along after many.......many years. I'm 52.

Micophenolate is a newer alternative to cyclophosphomide - it might be something to ask you're Doctors about ? - but what you're on is good solid well proven stuff.

It also might be worth asking them about blood pressure medications ( ACE inhibitors etc ) to keep the pressure off damaged nephrons. This will help them heal bit quicker and keep them healthy.

I hope you're feeling ok ? I know it's a freaky freaky ( and often confusing thing to have a renal flare with pathology numbers all over the place )

xox

Drakula profile image
Drakula in reply to Freckle1000

Your reply means a lot. Thanks that gives me hope.

I was first diagnosed with kidney disease in year 2012 at the age of 22. But as the ANA, ANCA, Anti da DNA results were negative, there was confusion regarding the nature of kidney disease.

But between 2012 and 2020, in last 8 years, my egfr went down to 28.

Fortunately, I consulted a new Nephrologist who is pro active. He advised kidney biopsy and the results of kidney biopsy is indicative of renal limited lupus nephritis. My Nephrologist is of opinion that ANA, Anti ds DNA negative lupus nephritis is extremely rare but he was hopeful that with proper medications, I will be able to stabilise the kidney function.

From last 1 month, he prescribed IV methyprednisilone for 3 days, then 60 mg oral Prednisilone for 30 days , along with high dose Cyclophasmide. The drugs did the trick and egfr has started improving. I am also taking 1.25 mg ACEI to control my BP. It remains around 135-85 . After completing 30 days of 60 mg Prednisilone, now the Prednisilone dose is reduced to 50 mg dose on alternate days for 4 weeks.

My Nephrologist is planning me to shift to Mycophinolate soon (500 mg tablets 3 times a day)

I am only 31 and I hope and pray for better kidney function in coming years.

I am very afraid honestly.

Would you please share your egfr at the time of your diagnosis??

Low serum protein albumin is also a concern as it is an indicator of kidney dysfunction. But improved gfr from last 1 month is giving me hope.

Freckle1000 profile image
Freckle1000 in reply to Drakula

I must admit I had a read of my old medical records a little while ago and couldn't find the eGFR. But I was told after the flare I was one month off renal failure. - ( my protenuria was definately at renal failure levels ). Another member at this site was familiar my nephrologist back then and told me she only took on serious cases.

I had another (bad specialist / totally preventable ) renal flare in 2015 and was told I was going to loose them - again with me they were concentrating on protien leak and the damage that was doing to them rather than eGFR and I wasn't renal savy enough at the time to ask. I believe a few years just prior to the flare they were dipping up and down to the low 40's. Now they're at a stable 90 and I've been told I shouldn't loose them in the long term. So there's absolutely no reason for you not to believe that you can get to well over 60 plus and more.

I also have a nephew who developed a weird adrenal problem and was at about you're renal numbers. He's a bit of an elusive individual but he tells me they're fine now.

To be honest I'm amazed at the healing power of the kidneys given the right treatment.

Having said all that - you have every right to be afraid. I remember I was terrified. ( as was my nephew ). It is a life altering trauma that you're going through and you're fear is nothing to be ashamed of. Its the very definition of shock and uncertainty.

The fact that you're eGFR is improving with these medications is a great sign.

With my second renal flare the mico and prednisolone worked really well but just didn't quite get me over the line. Ultimately it was the addition of ACE inhibitors and an increace of prednisolone that got me there. It does take time though.

( the doses you're on are very high so you don't have to worry about this )

People at this site have told me second renal flares aren't meant to happen - so you won't have to worry about this yourself.

Drakula profile image
Drakula in reply to Freckle1000

Your words gives me lot of hope. Thanks a lot for such a detailed response. You are amazingly cooperative.

My gfr has improved from 28 to early 40 in a month and it is giving me lot of hope. Next labs are after 2 weeks.

But my serum albumin and total protein level is now well below the normal range which indicates Proteinuria.

My nephrologist has advised urine protein test in order to quantify the exact amount of protein which I am passing through urine. I will do the labs.

One interesting point is I always has a normal serum protein albumin level with low grade Proteinuria but it's only after when my Nephrologist started my treatment on Prednisiolone and cyclophasmide, the levels of serum protein and albumin are down and he is suspecting Proteinuria.

So I was wondering whether improved gfr had any connection with Proteinuria and low serum protein and albumin??

I am very tensed and sincerely hope that both are unrelated .

Once again thanks for your response.

Freckle1000 profile image
Freckle1000 in reply to Drakula

Yep.......? It all sounds a bit confusing and above my payscale. You might be better off asking you're nephrologist about patholgy results as they have a broader picture as to whats going on with you.

Prednisolone is gold standard treatment and helps with SLE nephritis - along with the associated pathology tests - but patholgy tests can bounce around quite a bit while you're in flare / healing mode.

I'm glad to hear you're eGFR is improving. All good news.

All the best.

X

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