Falling GFR---help needed!: Hello, my lupus friends... - LUPUS UK

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Falling GFR---help needed!

shareasmile profile image
30 Replies

Hello, my lupus friends!

I need your help. I received blood test results today. My GFR (Glomerular Filtration Rate) fell drastically over the last 4 months from 79 to 68. Both numbers are within the range for stage 2 kidney damage. But if it falls that much over the next 4 months, I will be in stage 3. I'm only 53. Is this something I need to panic about?? I kinda already have! My Rheumatologist ordered the test, but he NEVER calls with results or directions. He just waits til the next appointment 6 months from now to check them!

If I understand correctly, this sort of thing is related to lupus, right? I'm crying on the inside and some is leaking out right now. So sorry to unleash on everyone here.

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shareasmile
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30 Replies
buryboy profile image
buryboy

Nobody has 100% function. You loose some function the older you get.

I'm currently 11% stage 5 40 years old still working full time. I also have 2 young kids and live a pretty good normal life well I did until I had a stroke but what I trying to say is at stage 2/3 you have little to no side effects.

Best thing to do is talk to your doctor they may advise you to look at what you eat ie reduce salt intake.

Depending on what you drank the day of your test would have affected the tests.

shareasmile profile image
shareasmile in reply to buryboy

Please see my note further down this post. =)

Crusee profile image
Crusee

Hi.

I have CKD (chronic kidney disease) at present my gfr is 21 % .

You are never at 100% and to be at 79- 68 is almost perfect for your age.

Speak to your doctor about it and they will explain more to you.

The gfr figure can go up and down, I was hospitalised in November as mine went down to 14 %?but a few months later it was back up to 38 %.

With me my gfr management comes with good blood pressure control.

I also watch the amount of salt I use and keep well hydrated.

I don't have lupus so not sure how thus affects you but your doctor will give you advice on what can help in your circumstances.

You will not feel any difference in how you feel until gfr Is very low as I did.

Don't panic at this stage as it's obviously not a concern your reading seems quite normal for a person of your age,in fact that is excellent.

Take care,stay well.

Crusee.XX

shareasmile profile image
shareasmile in reply to Crusee

Please see my note further down this post. =)

Elle-26 profile image
Elle-26

I believe the normal range is 60-125 (varies with age) ... Im 49 and mine show 50 ... I asked the Lupus nurse about the drop as the last one was 67 ... she explained that they are only concerned when it drops below the limit three times in a row .. Im a single parent and have been feeling unwell with a viral infection ... as long as they are keeping an eye on you I wouldnt worry .. xxx

shareasmile profile image
shareasmile in reply to Elle-26

Please see my note further down this post. =)

NikNaks profile image
NikNaks

stage 1 (G1) – a normal eGFR (above 90ml/min), but other tests have detected signs of kidney damage

stage 2 (G2) – a slightly reduced eGFR (60-89ml/min), with other signs of kidney damage

stage 3a (G3a) – an eGFR of 45-59ml/min

stage 3b (G3b) – an eGFR of 30-44ml/min

stage 4 (G4) – an eGFR of 15-29ml/min

stage 5 (G5) – an eGFR below 15ml/min, meaning the kidneys have lost almost all of their function

shareasmile profile image
shareasmile in reply to NikNaks

Please see my note further down this post. =)

Sorry you have had such a big worry about this. I'm same age as you - 53. Mine fell dramatically when I first started on BP meds a year ago. But it went back up again and on my print outs of blood results it always states that it's just over 60, which is apparently normal for my age and stage.

I do have a very large, irregular renal cyst and microscopic haematuria - but apparently those are both relatively commonplace too. I had a CT with contrast six weeks ago and all that showed up was plenty of wear and tear arthritis in my neck and spine -again predictable for my age and stage. I don't know enough about e-GFR but I'm reassured by what others here have told you. Twitchy x

shareasmile profile image
shareasmile in reply to

Please see my note further down this post. =)

mark3600 profile image
mark3600

As a retired kidney specialist I can help to reassure you that there is no major need for concern as most of the comment so far is sensible BUT it is important NOT to be too relaxed. Lupus in some people does cause substantial kidney problems so important to check with your GP and make sure that he (or someone else eg nurse, pharmacist, yourself) takes your blood pressure and takes action IF high ie less salt, more exercise and more medications as needed. A check of urine is also critical as without excess protein on testing or/and an excess of blood or white cells kidney problems are not likely to be acute. As you have been told repeating of the test is important as a change in the "wrong" direction is more important than the actual value. At lease one check fairly soon is sensible and may show an improvement or no change. If there is a certain change in the wrong direction but other tests are OK it may be enough just to do repeat tests more often... how often is up to the doctor and the extent of the change but less often than monthly may be suggested, especially if the urine in not normal, as there are good treatments now when Lupus does damage kidneys and specialist advice would be needed. Doc Martin

shareasmile profile image
shareasmile in reply to mark3600

Please see my note further down this post. =)

charm81 profile image
charm81

Lupus with kidney involvement was detected with me within 2 years of diagnosis in 1999 (aged 17). In my 20s my kidney function dropped to GFR 39 and was stable for 10 - 11 years under the care of Renal Specialists. By age 28 out of nowhere it dropped to 15 GFR and I was being told I'm now a pre dialysis patient.

It is definitely normal to have your concerns; but with careful monitoring and good Consultant care it can be managed. The replies here are very encouraging.

My case was a little more unfortunate and eventually had to commence dialysis age 29; but that was after 11 years of good management. The SLE got the better of me.

I'm now almost 2 years post kidney transplant and doing great!

I hope all the best for you x

shareasmile profile image
shareasmile in reply to charm81

Please see my note further down this post. =)

Buffy14 profile image
Buffy14

Hi I wouldn't worry too much like others have said, I have had stage 3 lupus nephritis from the onset of my lupus 14 years ago my gfr is usually around the 50 mark , last blood test 47 , it has remained around that for years , I do have to take immunosuppressant drugs to keep it that way and steroids and so I am checked every 4 months . My consultant recently said that if it remains stable at around 50 I shouldn't get to the dialysis stage but he said he can't promise that because a big flare could change my gfr .

shareasmile profile image
shareasmile in reply to Buffy14

Please see my note further down this post. =)

PMRpro profile image
PMRpro

Don't panic - you are along way from trouble and it is being monitored. The eGFR is calculated whenever a creatinine test is requested and is described here:

labtestsonline.org.uk/under...

All sorts of things could affect it and this article explains that

bcmj.org/article/demystifyi...

some is perhaps a bit complicated because it is aimed at healthcare professionals but the section "What is chronic kidney disease?" is easy to understand.

It says quite clearly that it isn't JUST the eGFR that matters - other abnormal readings and presence of blood in the urine are also required. And consistent eGFR readings below 60 are needed as well - it can vary due to diet and state of hydration. Even eating meat or fish not long before the blood is taken can lower the eGFR so it is likely to vary some from blood test to blood test anyway.

Doc Martin said the rest!

ExtremeDuvetDaze profile image
ExtremeDuvetDaze in reply to PMRpro

Very informative article PMRpro, thanks for sharing 👍🏼

shareasmile profile image
shareasmile in reply to PMRpro

Please see my note further down this post. =)

ExtremeDuvetDaze profile image
ExtremeDuvetDaze

Hi shareasmile,

My kidney function tests have fluctuated over the last 18 months. The first results were missed by my surgery but picked up 5 months later by my cardiologist who was not best pleased as I had been taking Arcoxia for a long time and they wondered if it was this causing the problem, I was also on an ace inhibitor but I haven't been taking either drugs for a while now and my blood pressure is stable ( probably the arcoxia causing the rise in blood pressure) yet still mine have declined!

In march last year my gfr was 57 but by Nov it had recovered to 70 then in May this year it was 52 and June 69 by September it was down to 42 and my creatinine was 117 so I've now been referred to a renal specialist, I have felt really concerned since septembers result but I'm trying not to think about it as other than eating healthily and drinking plenty there's not much else I can do at this stage. My GP doesn't think it's lupus nephritis as there's no protein or blood in my urine and my kidney scan last December was normal too.

I get copies of all my test results since they missed it so I can make sure nothing gets missed in the future.

Have a chat with your GP about your concerns so they can keep an eye on you and try not to worry too much at this stage, like the others have said it can fluctuate.

All the best

Diane 🌺

shareasmile profile image
shareasmile in reply to ExtremeDuvetDaze

Please see my note further down this post. =)

Hello,

Since your next appointment with your specialist is a few months away, you might want to make an appointment to see your GP in the interim and discuss your concerns. They may be able discuss your test results.

We also have a booklet on lupus and the kidneys which you might find useful lupusuk.org.uk/wp-content/u...

shareasmile profile image
shareasmile in reply to

Please see my note further down this post. =)

Hbiff profile image
Hbiff

Hi, It is a worry when you see a result drop and we all look on the net for an answer which can sometimes set us more worrying. I agree with what has been said, so far theres no urgent cause for panic but there is a reason to be re tested sooner than 6 months! I actually asked my rheumatology consultant if he could refer me to a Renal consultant, which he did and they both look after me really well. My kidney function is just below 30% but stable with both blood pressure medication and immunosuppressant (Mycaphenolate, prednisolone and hydroxychloroquine) I have had Lupus for 40years. Please try not to worry but do ask for another blood test along with a urine test.

Hope it all settles down soon.

Take care

shareasmile profile image
shareasmile in reply to Hbiff

Please see my note further down this post. =)

Evaj3 profile image
Evaj3

I would not worry too much, make sure you drink plenty of fluids. Mine went from 120 to 53 and yoyo's around 60-90.

shareasmile profile image
shareasmile in reply to Evaj3

Please see my next post. =)

shareasmile profile image
shareasmile

I cannot express my gratitude enough to all of you here! Many, many thanks for putting my mind at ease. I'm learning--slowly, but I'm learning, that each new sign or symptom that arises during this journey is something that someone else has experienced and worse. The wealth of knowledge and genuine concern here is invaluable.

Natura profile image
Natura

I would suggest following a kidney diseaes diet. Less protein. Research.

PMRpro profile image
PMRpro in reply to Natura

Only if her doctors agree though.

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