What I learned shortly after being diagnosed is that if you don't have proteinuria, you don't have to be afraid. The rest is easy to solve with attention and proper nutrition. Proteinuria significantly reduces life expectancy. Otherwise, you may live long before reaching the final stage of kidney failure. And I don't know if proteinuria can be kept under control once it starts.
Proteinuria: What I learned shortly after... - Kidney Disease
Proteinuria
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milo_miller
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My son too was diagnosed with proteinuria. His only 18 yrs old. Got a referral to a nephrologist, but it's almost 4 weeks and still did not secure an appointment. It's disappointing.
Are you in the US or the UK?
US
Ask your primary care doctor for a referral to another Nephrologist. You can also google top Nephrologist and request a referral to a particular doctor.
You are right but the levels of protein you are dumping plays a bigger role. It depends on the underlying cause also. My husband has proteinuria for the past 2.5 years. His neph wasn't doing anything about it since he's not dumping a lot; 1.4 grams in 24 hours. Well, since proteinuria is bad at any level over normal, we didn't accept that. Went to a new Nephrologist and she's starting him in low dose (12.5 mg) of Losartan for his proteinuria. She wants to see his tolerance level so he's monitoring his BP twice a day. So far, it's not affecting his BP negatively.
I am glad that he manages well wlth Losartan. It is one of the most capable arsenals agsinst proteinuria as far as I know.
You appear to have had a similar experience to us with my mum (ckd 3). Her nephrologist (who we dont rate highly) also hasn't done anything about her increasing proteinuria since she's not dumping a lot; less than your husband at a max 0.44 grams in 24 hours. We also didn't want to accept that and considered a new nephrologist. However, her urologist (who mum does rate) said that, as kidney functions, there will inevitably be some spillage.
This seems to be borne out because her proteinuria is directly related to her eGFR. So 24h figure recently fell from 0.44 to 0.26g when her eGFR fell from 76-46 ml/min after both had gradually increased in the previous 5y eg eGFR was 36 following a nephrectomy ~5.5y ago. Her eGFR is now stable at ~58 - unfortunately urine test results are unavailable but we'd expect 24h fig to be ~0.35g if the above trend is followed.
In summary, there appears to be a balance between kidney function and proteinuria where she has to accept ~0.35g/24h leakage with a kidney function around 60 which seems to be a reasonable compromise.
We are generally anti-drugs so unlikely to want to go down the road of ARBs or ACE inhibitors, particularly in view of possible side effects. Her good progress is purely down to improved nutrition and lifestyle. Note her neph said he wouldnt prescribe for her with her stable, good BP at ~125/80 so that's fine to us.
PS we will continue to monitor, particularly as her microalbumin continues to increase albeit at a slightly lower rate than before.
what about her uric acid levels? Proteinuria may be due to high uric acid also
My husband's uric acid (blood) is super low and he has proteinuria.
Mum's serum urea was just within normal range pre-nephrectomy then ~doubled afterwards, staying stable at ~9.5mmol/L ie ~30% above normal.
Proteinuria could be due to high uric acid levels. If you heal it easily, proteinuria may return to normal levels. Please concentrate on this.
I presume youre suggesting an ARB for "healing" eg losartan?However, note it's likely different with 1 kidney than 2. I have a link to an old study which indicates proteinuria is often worse with sole kidneys. The trend of mum's urea before/after nephrectomy may also support that if proteinuria is directly related to serum urea, now stable.
As previously indicated, some proteinuria may be expected and even acceptable if low enough eg <1g/24h. We'd be concerned at that level but indications are that it shouldn't get there, as supported by mum's nephro who said her proteinuria would never be problematic.
Uric acid has been debated for years re it's effect on CKD.
PS links available for all of above.
I was prescribed anti-gout drugs for high uric acid. Colchicine and Allopurinol
Many thanks but, for the following reasons we will not yet address uric acid:
1. Urea is stable and likely 30% high due to having only 1 kidney which is unresolvable.
2. Mum's proteinuria is classed as moderate and unlikely to increase further.
3. We are largely anti-drugs, only considering as a last resort.
But we will continue to monitor.
How fortunate! I’m prescribed Losartan for the HBP but it RAISES my blood pressure to dangerous levels. So far, I don’t understand my nephrologist and may need to switch to someone more interested in my well being and not just prescribing and see you in 6 months. I’m getting ahead of myself because only yesterday was my lab results that showed more drastic unimproved results despite efforts to increase sodium n stuff.
Fortunately I’m older and not so bothered as I SURE WOULD BE if it were my young son. Best wishes on his management over MANY YEARS👍
It raises your blood pressure? Losaratan? That doesn't make since
yes. My dr doesn’t believe it either. Going to give it another go with BP monitoring closely. Will report back, if I can find my way here again.
Keep us posted . ARBS are front line therapy for proteinuria. Are some other sortans like telemesarton valsartan and a few more
Must’ve been my mistake. Further use found no such problem problem.
I was diagnosed at 21 with stage 3b and had proteinutia. For me, losartan, low sodium diet, and regular exercise has worked for me.
Hi Turtle!My husband just turned 40 and he's had proteinuria for 2 years now. I think he's dumping around 1.4 grams in 24 hours. Anyway, his old Nephrologist wouldn't treat it, just kept having him stop in to talk every 6 months. We got fed up and now his new Nephrologist is treating his proteinuria. He's been on a low dose; 12.5mg of Losartan for a week now without side effects. He is also on low sodium. Just wondering how you are doing and what were your results with the medication? She also wants to put him on a SGLT2I eventually but not yet.
It’s been almost 13 years since diagnosis - Dec 2009. Now in stage 4. It has lowered my high BP and I know it lowers my proteinuria. Hope that helps.
Thank you. Do you know the cause of your ckd and proteinuria?
FSGS
good afternoon did you know about it by a test that you had that dieases
good afternoon
i got this results Albúmina *4.10 g/dL 4.20 - 5.50 down
Inmunoglobulina M *102.80 mg/dL 40.00 - 80.00 up
and the dr prescibe me every 12 hrs drink norfloxacin 400 mg and 100 fenazoprin witch is one tablet will i damage more the kidney or drink it every 24 hrs
the reason why he prescribe this is that used a dipstick and said that i had an infection
now i dont know if this is meaningful or grave according to ckd or related to an infection that this might be huelpful in related the way to take it
i also want to say I am now on a SGLT2 - Farzxiga didn’t work, but knock on wood, Jardiance seems to be working. - Also I’m non diabetic.
i have all this itch i have proteinuria pbut my electrolites are all fine only albumin a little bit of itch really dont know what it is since when you talk about itch it can be so many things
Losartan raised my potassium levels to borderline high and did nothing for the proteinuria. I don't think I'll believe your statement that is significantly reduces life expectancy.
I dont say it. It is written in the article in the following link. (National Library of Medicine) ncbi.nlm.nih.gov/pmc/articl...
Still not going to accept it as listed in the Limitations the study didn't take into account any other health reasons people might have had. Nor did they consider transplants of those people who had (ve) proteinuria.
Actually, a GFR or lower than 60 reduces life expectancy independent of proteinuria, though proteinuria plus low GFR reduces it more. Look more carefully at your own link (though maybe your GFR is over 60) at the colored chart near the bottom. Of course, worry is never helpful, and relaxation plus a healthy vegan diet has a remarkably good effect on your health and life expectancy. (ncbi.nlm.nih.gov/pmc/articl...
High uric acid levels do not cause proteinuria but are a cause or indicator of future CKD in non-CKD patients and CKD can result especially in the stage 3b or worse levels of the disease. There is a high causal relationship between the two especially in diabetics but the relationship is high uric acid causes accelerated glomerular hypertension and the vascular lesions, resulting in worsening proteinuria and renal failure associated with worsening glomerulosclerosis and tubulointerstitial disease. The high uric acid levels cause CKD which leads to proteinuria potentially if the CKD progresses to stage 4 especially with diabetics at most risk. All outlined in an original study from 2013 as shown at this link:
academic.oup.com/ndt/articl...
eGFR less than 60 is one of two recommended test by the BKF, ASN and CDC for establishing a diagnosis of CKD. The other necessary test for a proper diagnosis is UCAR according to universally accepted physician guidelines outlined in the updated KIDGO guidelines and accepted by most Western Countries, China, Japan and certain areas of India. If diagnosed with CKD the disease is usually chronic and progressive so just as with other degenerative abd chronic diseases can shorten life expectancy. Proteinuria is an indicator that kidney nephrons are actively being destroyed and can indicate a increase in loss of kidney function worsening a current case of CKD. So it stands to reason that eGFR is a indication of CKD and CKD can result in higher mortality compared to healthy individuals. Similarly, proteinuria usually indicates active destruction kidney cells leading to a worsening of CKD and potential ESRD. Both of those illnesses along with dialysis increase mortality compared to healthy individuals. That makes sense though as sick people usually die earlier than healthy people. However neither are a death sentence nor is uric acid, proteinuria or eGFR control or diet, or any other “treatment” a black and white way to reverse or control CKD and thinking in absolutes is a wrong-headed method to either live with CKD or offer advice for others to live with CKD. Instead each of us are unique and our CKD manifests differently due to our specific genetic make-up, underlying causes of CKD, comorbities and overall general health. So do your own research, talk to your trusted physician in-depth and find out what YOUR SPECIFIC triggers that make your CKD worse or can help delay progression. For me it’s weight under 200 and BP below 120/80, diet makes little difference in MY SPECIFIC CASE. Others here have had success in managing progression through diet. New treatments show promise as well with the recent approval of one SGLT2 for treating CKD progression in non-T2D patients in the US and another more effective SGLT2 with use in non-T2D patients with eGFR levels as low as 20 6 year clinical trials stopped early due to the benefits shown and risks near zero on the emergency approval list of the US FDA. So do your own research on trustworthy websites suck as NKF, AAKP, AKF,ASN, PubMed,NIH in the US and NHS, Kidney Care UK or the UK Kidney Association (NHS has a list of several sites under their CKD section). Stay away from “experts” who know more than doctors but aren’t doctors themselves that want to sell you their CKD reversal treatments, YouTube, Facebook and those offering diagnosis’s and treatments as facts on this site. Become the smartest person in your care givers circle on your CKD by using medical evidence from trusted sites with peer reviewed studies such as the journal of nephrology in the US or the Lancet in the UK. To quote an old US president “trust but verify!” No one will ever be a better advocate for your health and how to manage YOUR CKD than you so find the time to dedicate to making yourself smart, always question and research anything you read, hear from a doctor or see on Facebook, YouTube or here. I’m not a doctor, I’ve lived with stage 4 CKD for nearly 27 years and worked to helped newly diagnosed CKD/AKI/ERSD patients almost 25 years so I’ve got my experiences. I’ve researched CKD in-depth almost 15 years so I have knowledge of how to read and understand medical studies and where to go to get quality, trustworthy information but that doesn’t make me an expert only a patient like all of you. So no diagnosis’s or treatment recommendations from me only hopefully helpful information for some with cited and linked medical studies to help with further understanding. If I help one person that would be awesome. Some dislike the length of my posts or perceive an attitude from me that I don’t have but the written word on sites like this leave open personal perceptions I can’t control. Just know I wish only the best to all in their CKD journey, hope to be helpful and never, ever mean to offend or sound like a know-it-all. For those who are believers God Bless, for those who are non-believers all my best wishes!
I hope this adds hope to those with high proteinuria after reading your post on life expectancy and proteinuria. I was first diagnosed with proteinuria with a spot sample of 1100+. That was about 16 years ago. At that time my eGFR was approximately 55. I have continued to have high proteinuria (though it did decrease to about 300+ for several years -- in remission?? It runs about 3000 now (should be less than 30). My eGFR is approximately 22 BUT, it's taken me over 16 years to progress to this point. I'm now 74 years old. Everyone is different - do what the doctor recommends and don't give up hope. Sometimes that all we have.
My CKD was caused by Vasculitis which affects small and medium blood vessels. I've gone from stage 5 (GFR=6) to stage 3b (GFR=32) over a 5 year period. I been seeing my neph regularly every 3 months over this period and he orders blood and urine labs each time. I have kept a spreadsheet of my critical lab numbers and posted it here a while back. My urine protein level varies depending on what time of day I give the sample, how many times I've peed that day before the sample, and how much water I drank prior to the sample. I've had readings of "none seen" to as high as 2+. I've been taking Losartin this whole time and not sure I agree that there is a direct correlation to proteinuria other than the Losartin brings your BP down which may not force as much protein through the nephron filters. As with any of your lab test readings, it's important to look at trends over time or asking for a retest if you think the numbers are skewed due to some other event. Here is a good article on the subject: aafp.org/pubs/afp/issues/20...
Blackknight1989 in reply to
ASN.org, ncbi.nlm.nih.gov/pmc/articl...
my.clevelandclinic.org/heal...
Aside from uncontrolled HTN, one of the strongest prognosticators for declining kidney function is proteinuria. A “spot” urine protein-to-creatinine ratio (UPC) or urine albumin-to-creatinine ratio (UACR) quantifies proteinuria. Generally, UPCs 1 predict more rapid functional decline and more intensive evaluation, ie, kidney biopsy.
And many more. If I read your post correctly your CKD is due to what you described as vasculitis by which I am assuming you mean high blood pressure. It’s either that or due to IgA an autoimmune issue. Regardless proteinuria in health people is exceedingly rare and usually seen only in those lifting heavy weights consistently thereby raising their creatinine and not rehydrating properly. In the othe 95% of those of us with proteinuria it is a result of either CKD or AKI and indicated active damage. It’s abnormal and indicative of kidney nephrons being destroyed real time. It should be the second thing addressed after determining and controlling the primary cause of CKD after initial diagnosis. The use of either ACE or ARB medication is effective in helping control proteinuria and other than diet has been one of the only treatments available to address proteinuria. These have been used with success to control proteinuria since the early 2000s. However, two 6 year studies just completed in 2022 have demonstrated the more effective treatment in both T2D and non-T2D CKD patients of the SGLT2s of Farxia and Jardiance. In the US Farxia has received emergency FDA approval as a treatment and Jardiance is expected to receive the same approval first quarter 2023. The links to the studies or other studies of the benefits and almost no risks of SGLT2s:
healio.com/news/cardiology/...
healio.com/news/nephrology/...
clinicaltrials.gov/ct2/show...
LL when you are referring to the test for your specific proteinuria are you referring to a blood test or a urine test. The proper and only way to measure proteinuria is by a urine test as the definition of proteinuria is “excess proteinuria in the urine” and is often confused with UCAR which is the second test needed to diagnose CKD and is used as you indicate to indicate either a worsening or stabilization of kidney function (along with eGFR) over a series of several lab results. Specifically eGFR measures remaining “good” kidney function and UCAR measures the damaged sustained already to the kidneys. Finally this is a tool provided by the US CDC that may help you in keeping track of and further explain your lab values:
chrome://external-file/Your_Kidney_Test_Results_EN.pdf
niddk.nih.gov/health-inform...
Otherwise LL you are spot on in what you are doing. Maybe these additional sites will add some tools to continue your obvious hard work of educating yourself so you become you best advocate. I’ve had CKD stage 4 since 1996 and worked with newly diagnosed CKD/AKI patients since 1998. First time in 27 years I’ve been excited due to our disease finally getting some funding leading to the SGLT2s and stage 1 trials of an artificial kidney to do away with the archaic 1950s technology treatment of hemodialysis. One more thing, doctors are not smart on our disease. For most all of them it was the conservative management of CKD until stage 5 then they could treat us. So it wasn’t taught. From a HelioMed study less than 50% of Nephrologist do not follow the practice guidelines published by the National Kidney Foundation and the American Society of Nephrologists the parent organization that the same nephrologists are all members of and receive the journal publishing the guidelines! So in the words of President Reagan “Trust but verify!”
in reply to Blackknight1989
Thank you Blackknight1989, you keep plugging away there buddy. From what I've read of your other comments and your profile, you seem to have an awful lot of time on your hands. Yes, if you had read some of my other replies, you would see that I was diagnosed with GPA, probably something you are not familiar with at all. It's an autoimmune disease that has caused kidney failure in many people even though it is a fairly rare disease. Try using your over abundant time and read up on it and report back to me with your findings.
Blackknight1989 in reply to
Thank you so much, sir, for the reply and for correcting my assumption of your underlying causes. Actually I asked a couple of questions today in other posts I think to gain some knowledge (Again if I understand correctly that’s IgA or Granulomatosis with polyangiitis [or previously known as Wegner’s] correct?). Can help with that, but what I’ve found is mostly written in physicianese. That is a particularly nasty issue in what little time I have researched. BY THE WAY, was that a backhanded insult directed towards me….”a lot of time on my hands….” I just may be offended…lol! In all seriousness you nailed it especially when the perfect storm of all my issues decide to flare at once as in the last 3/4 days. Currently on my fourth day (3rd night last night) with no sleep. So now you are going to put me to work huh? I’d be happy to help, sir! However, I may need a couple of days as it is likely I’ll crash soon and may not accomplish the task at my normal speed! Besides what else would you have me do? Play video games…lol?!? I’ll keep you informed!
in reply to Blackknight1989
I was diagnosed in 2017 and I have spent countless hours researching my diseases. I started getting "sick" in Feb and wasn't DX until July so the disease had a lot of time to do damage to my body. After seeing 4 different doctors during that time period, it seems that Wegener's isn't on top of their mind. When I entered the hospital with a GFR of 6 and pretty much every reading in the blood work was out of range, the doctors told me later that they didn't think I was going to make it. Anyway, a biopsy of my kidneys was sent to Brigham Young hospital in Boston and it came back positive for C-ANCA (PR3). I was immediately started on hemo and high doses of immunosuppressants. You will find that GPA is one of 3 types of Vasculitis. Before the 1970s, people did not live very long with this disease because there was not treatment. I am currently in remission but get tested for ANCA every 6 months by my Neph. Patients will often get flares and immediate treatment is needed to stop it as soon as possible. I have been one of the lucky ones who's kidneys have recovered enough to get off dialysis and have not had any major flares. You could join the Vasculitis group on this website and see quite a few people with GPA and their experiences. I am 71 years old. Besides the GPA and CKD, I had radiation treatment in 2019 for prostate cancer so you can see I have had my share of medical nightmares.
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