Introduction: Hello, I was just diagnosed... - Kidney Disease

Kidney Disease

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Introduction

Holidak profile image
43 Replies

Hello, I was just diagnosed with CKD (55-60 eGFR) and want to learn as much as I can to prevent my eGFR from going any lower. I am only 57 and want to live a long life. I do not have HBP or diabetes. I plan to read many posts and learn more. I do need to lose weight, but that has been a lifelong issue. I was vegan for 3 years and it helped my cholesterol and blood pressure, but not my weight as vegan has so many carbs. Trying to learn something new. Thank you all for your insight.

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Holidak profile image
Holidak
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43 Replies
S_dillow profile image
S_dillow

you come to the right place.theres a lot of info on here and the davita and nkf websites to help .ask away and read the posts on here you learn new stuff all the time.

Pisces101 profile image
Pisces101

wishing you all the best!

Pontios profile image
Pontios

1. Ask your Doctor for SGLT2 Inhibitors. They will likely slow down or even possibly prevent further deterioration in kidney function. 2. Read up on the potential for renal damage of any medications you may take, do not take NSAIDs, PPIs can also be harmful. 3. Stay well hydrated at all times. 4. Limit salt intake. 5. Follow general healthy advice: don't smoke, limit alcohol, eat natural not processed food, exercise, limit protein intake, you could go further and go plant based. Best of luck.

pheebee profile image
pheebee in reply toPontios

Can I ask whether SGLT2 inhibitors are suitable for non diabetics? Just interested as I'm similar to Holidak, no high bp, no diabetes, slightly underweight.

Pontios profile image
Pontios in reply topheebee

Yes. Suitable for non diabetics. Likely to slow or stop progress of CKD

userotc profile image
userotc in reply toPontios

Do you have reported evidence theyre suitable for non diabetics?. If so, please send.

NICE guidelines dont yet appear to include yet, see from 1st link below "The guidelines also noted studies were taking place to assess the usefulness of SGLT2 inhibitors for people with CKD who do not have diabetes, but the evidence was not yet strong enough". And the indication from the latest report I can find (2nd link) is its only evidenced for proteinuric ckd with/without diabetes.

nice.org.uk/news/article/ni...

kidneymedicinejournal.org/a...

Pontios profile image
Pontios in reply touserotc

Plenty of literature now on usefulness of SGLT2 Inhibitors in CKD without Diabetes. See EMPA kidney for instance or seencbi.nlm.nih.gov/pmc/articl...

userotc profile image
userotc in reply toPontios

Yes I've got that report but again it only refers to those with albuminuria as per the end of my previous comment re 2nd (2023) report I linked. Agree?

See also my reply to OP. I'd also be interested to know if it's albuminuria or proteinuria that's most relevant. As per recent blog I linked in my post on ckd with a single kidney, theyre not necessarily the same.

HeartyJames profile image
HeartyJames in reply topheebee

Yes and very good for heart failure with no diabetes. I used to have them but had to stop as I get very low blood sugar and not diabetic. Unusual

pheebee profile image
pheebee in reply toHeartyJames

Yes that was what I was wondering about, lowering blood sugar too much for someone who is non diabetic could be potentially dangerous.

HeartyJames profile image
HeartyJames in reply topheebee

Mine went to 1.9mmol

pheebee profile image
pheebee in reply toHeartyJames

That is alarming...my dad was type 2 diabetic on insulin, saw him have a few hypo's, really scary.

Holidak profile image
Holidak in reply toPontios

Thanks. I was vegan for 3 years and plan to go back to it mainly but allow some fish and occasional chicken. Limit protein to how much? My DR is retesting me in 3 months and then will decide on inhibitors. She said they initially may make eGFR go down a tad, but then stabilize. I started drinking 60 Oz of water a day. I do have GERD and take generic Nexium rx but was told to start taking it every other day. Hopefully once I lose some weight the GERD will subside and I can stop the Nexium altogether or go back to famotidine which isn’t a PPI. I appreciate your guidance.

Pontios profile image
Pontios in reply toHolidak

You might need to push your doctor on the SLGT2. I wish they were around when I had had an eGFR of 50 and I might be better off now. I believe Nexium is a PPI, pretty certain that will cause CKD deterioration. Protein less is better but stay at at least 0.5gm per kg body weight

Badger2024 profile image
Badger2024 in reply toPontios

My nephrologist put me on Ozempic to try and stabilise my CKD. Is that an SLGT2? I didn’t take it last week. Makes me nauseous. My nephrologist told me to try and push through with it but I’m not sure I’ll take it again. I took it for about ten weeks. I see her again in three weeks time. Is there a different SLGT2 medication that you know of that I should switch to? I’m not sure where to begin researching it but I know my nephrologist is excited about trial results if ozempc. I’m not diabetic by the way. My last eGFR was 46

Pontios profile image
Pontios in reply toBadger2024

I can't tell you to switch to anything. I am not a medic. I can just offer some advice. Ozempic is a GLP1 receptor agonist a different type of drug to SLGT2 inhibitors. Both types have been shown to be likely to slow progression of CKD. Best thing is to read up on the trials of these drug in CKD patients. SLGT2 drug names end in "flozin" é.g. Empagliflozin (Jardiance). Your Nephrologist should be able to advise what is best for you.

Badger2024 profile image
Badger2024 in reply toPontios

Ahhh thanks for that. I’ll look up about SLGT2 inhibitors then

Badger2024 profile image
Badger2024 in reply toHolidak

I’d be getting off nexium. That’s what gave me CKD. Is that the cause of yours too? I’ve been put on famotidine but it hardly works if at all. I also take Gaviscon after meals and before bed

WinJ3 profile image
WinJ3 in reply toBadger2024

Be careful According to the LHSC, Gaviscon contains alginic acid and should be avoided by people with chronic kidney disease.

Badger2024 profile image
Badger2024 in reply toWinJ3

It was my nephrologist who told me to take it

WinJ3 profile image
WinJ3 in reply toBadger2024

Is it prescription or over the counter?

Badger2024 profile image
Badger2024 in reply toWinJ3

Over the counter

WinJ3 profile image
WinJ3 in reply toBadger2024

Glad that it’s working for you without side effects. I am taking Omeprazole.

Badger2024 profile image
Badger2024 in reply toWinJ3

Omeprazole is a PPI too. Not good for kidneys. None of them are. The Gaviscon isn’t really working for me. I didn’t realise it also wasn’t good for me. I’ll start taking it before bed only. Thanks. I have a hiatus hernia that makes my silent reflux so much worse. A bit worried about damage it’s doing to my oesophagus. I’m going to get a referral to a surgeon to see about getting the hernia repaired and will get a gastroscopy to check out my oesophagus

WinJ3 profile image
WinJ3 in reply toBadger2024

Yes, I was concerned about the long term use. I am thinking about trying Iberogast. I heard it’s effective for acid reflux and good for the kidneys. Sorry to hear about oesophagus.

Badger2024 profile image
Badger2024 in reply toWinJ3

Interesting. Haven’t heard of that one

WinJ3 profile image
WinJ3 in reply toBadger2024

Yes, Iberogast is listed as a treatment for kidney disease on the Iberogast website. Iberogast is an over-the-counter multi-herbal medicine that treats gastric and abdominal discomfort associated with gastrointestinal issues such as irritable bowel syndrome (IBS) and functional dyspepsia. It contains alcoholic extracts of plants, including Greater Celandine, which is used in traditional Chinese medicine to treat dyspepsia and gastrointestinal discomfort

Holidak profile image
Holidak in reply toBadger2024

I don’t know what caused mine but I had an eGFR once of 55 before I ever started Nexium. I was on famotidine then. My Dr then said I was probably dehydrated and dismissed it. Then the next several years were lab tests of just over or under 60 and many years came back greater than 60 but we don’t know if that was 61 or what. Then in 2023 I started getting real numbers.

Badger2024 profile image
Badger2024 in reply toHolidak

Same story as me really other than a longer time on nexium. Famotidine isn’t great for kidneys either but it’s better than Nexium. I still don’t understand why we don’t get told that an eGFR level of 60 is bordering on irreversible CKD3. I would have changed things up years ago

Holidak profile image
Holidak in reply toBadger2024

Exactly. Why is the lab only reporting below 60? That’s negligent. My nephrologist said I should be closer to 83 based on my age. I would have liked to have known the moment I dipped below 80.

userotc profile image
userotc in reply toHolidak

Keep us posted re SGLT2s. As per my reply to Pontios just now, there's no medical evidence for non-diabetics yet and its not in NICE recommendations as far as Im aware so that would explain why your doctor is unlikely to prescribe at present. As far as I can see, NICE is currently only for “people have an estimated glomerular filtration rate (eGFR) of 25 ml/min/1.73 m2 to 75 ml/min/1.73 m2 at the start of treatment and:

- have type 2 diabetes or

- have a urine albumin-to-creatinine ratio (uACR) of 22.6 mg/mmol or more

nice.org.uk/guidance/ta775/...

I dont think you qualify but dont know your uACR?

Blackknight1989 profile image
Blackknight1989 in reply touserotc

Here you go…from Kidney.org:

SGLT2 inhibitors are effective at slowing the progression of kidney disease, reducing heart failure, and lowering the risk of kidney failure and death in people with CKD and type 2 diabetes. SGLT2 inhibitors also protect the kidneys in people with CKD who do not have diabetes.

link:

kidney.org/atoz/content/sgl....

userotc profile image
userotc in reply toBlackknight1989

Yes I think I have that link but it's a statement, not scientific evidence. Sadly NKF has a habit of making statements without referring to robust, scientific evidence (I messaged them several times in recent years re covid vaccine evidence for ckd, but received nothing).I'm not saying their statement doesn't have related evidence but that, without referring to it, it's open to interpretation. For example, they may mean only proteinuric ckd and diabetes - I linked scientific evidence for that 3 days ago in reply to Pontios.

I think it currently leaves various uncertainties for sglt2s and ckd eg

(i) ckd without proteinuria

(ii) relevance of albuminuria or proteinuria and their related levels. One of my references in this thread refers to albuminuria, another to proteinuria but they are not necessarily the same thing, as per blog I referred to.

(iii) CKD without diabetes generally. Based on NICE's statement about evidence not being strong enough (my reply to Pontios 3dys ago).

Despite my mum having increasing albuminuria (but arguably ok/stable proteinuria, as per blog), her nephro's never suggested sglt2s. I suspect that may be due to NICE guidance eg above weak evidence?.

Blackknight1989 profile image
Blackknight1989 in reply touserotc

EMPA-Kidney was the huge breakthrough study stopped early in May 2022, that proved SGLT2i inhibitors are the new foundational treatment for stage 1-4 CKD, regardless of the etiology of the CKD or the presence of albumia or proteinuria …many cardio-renal protective mechanisms and is well-tolerated, seems to benefit all the accept T1D and a couple of others, low-occurring genetic defective disease mechanisms. A couple of quotes from the ASN “Kidney Week 2022…From a Medscape article:

“Before the EMPA-Kidney results, we knew that SGLT2 inhibitors worked well for patients with diabetes and CKD, but we really didn't know about patients with CKD without diabetes, nor in subtypes of CKD, nor in patients with minimal-to-normal albuminuria," commented Naveed Sattar, MBChB, PhD, professor of metabolic medicine at the University of Glasgow, UK, and designated discussant for the report at the AHA meeting.”

also:

subgroups based on CKD etiology, EMPA-Kidney included — in addition to patients with diabetic kidney disease — substantial numbers of patients with ischemic and hypertensive CKD, and patients with glomerular disease including IgA nephropathy, although polycystic kidney disease was an exclusion criterion, Sattar noted.

Another important subgroup of patients with CKD included in EMPA-Kidney was those with stage 4 CKD with an eGFR of 20-29 mL/min/1.73m2, who comprised 35% of those enrolled. Also, patients with normal albuminuria levels with urine albumin-to-creatinine ratios (UACR) of less than 30 mg/g constituted 20% of the enrolled cohort, with an additional 28% having a UACR of 30-300 mg/g.

By confirming the efficacy of an SGLT2 inhibitor in this broad representation of patients with CKD regardless of their diabetes status, the EMPA-Kidney results together with the meta-analysis findings established SGLT2 inhibitors as a "foundational" treatment for patients with CKD, just as the class has become foundational for treating virtually all patients with heart failure, Sattar emphasized.

Since there have been several meta-analysis as well as “real world efficacy studies” all confirming the benefits of SGLT2 inhibitors. Unfortunately many nephrologist in the US don’t prescribe because they don’t know about the tremendous benefits or they do prescribe but don’t know about the initial eGFR drop so they discontinue the RX because they think the SGLT2 are damaging rather than protecting, in the UK it’s a guideline and AI problem that with both Nice and the other agencies that publish guidelines…BUT and Userotc I see why you are uninformed because NICE is absolutely mistaken on their clinical recommendations for use of and efficiency of SGLT2s in nonT2D patients…Here we are in asking about albumin or Proteinuria and your NIH still won’t hasn’t updated for non~T2D patients…That is malpractice as there are literally 100s of studies and real world observational analysis of the actual benefits in non-T2D patients.…

Blackknight1989 profile image
Blackknight1989 in reply touserotc

I’ll post more later to include links. But quickly EMPA-Kidney the vast study validating SGLT2s as cardio-renal protective for all kinds of metabolic syndrome diseases… stops CKD progression, helps non-alcoholic fatty liver, T2D, heart failure, hyperlipidemia, HBP and on and on…they have a almost anti-inflammatory like response to smooth the pathways between cells for chemical reactions and “cross-talk” and as such like for me they would be reno-protective, the reduce a initial significant CVD event by 38%, lower my hypertryglicemia, control my HBP, lower all lipid levels and help with my frailty from years of leaking protein, having poly-osteoarthritis and now some wasting osteoporosis like issues due to the long standing CKD and the calcium leaching issues it causes long-term…here some inks quickly!

medscape.com/viewarticle/98...

EMPA-Kidney Study:

empakidney.org/

The Emporor Reduced study was a Heart Failure study that found:

“Moreover, in patients with and without CKD, empagliflozin reduced a kidney composite outcome that incorporated clinically meaningful and sustained deterioration in kidney function, chronic dialysis, and kidney transplant; treatment with the drug reduced the proportion of CKD patients with anemia…yet NIce say now evidence…lol that’s crap unless they only use UK studies.. Finally a screenshot of the 1475 studies since 2022 in the US National Library of Medicine run by US DEPT of HHS who oversees our version of you NHS..that 1475 studies that your Nice researchers could copy and paste, but oh well let’s pay for dialysis not a $60/day pill…that it’s blood my mind they put that in black and white when it’s so easily refuted and proven false!

userotc profile image
userotc in reply toBlackknight1989

Wow, youve been busy researching SGLT2s, much appreciated! In brief:

1. Arguably, for mum, the most appropriate study, indirectly via your Medscape link is: nejm.org/doi/full/10.1056/N... as currently her key eGFR and ACR measures fall within the range 45-90 and >200mg/g included in the study.

My main concerns with this are:

(i) Progression of kidney disease (or death from cardiovascular causes) is only 3.8% lower with the drug ie 13.1% vs 16.9%.

(ii) Ketoacidosis occurred in numerically more patients taking the drug (Research Summary). Currently Im concerned about mum's serum bicarbonate levels - although her nephro appears not to be! Note lower limb amputations were higher too.

As with any medical intervention, I would consider (i), (ii) in a risk-benefit analysis (rba) along with other risk/safety issues reported elsewhere.

(iii) All patients presumably had 2 kidneys whereas mum has 1. You may have read the blog Ive posted previously (or you can find on oc nutrihealth website, top RHS/Blog) which indicates there may be some differences for ckd with single kidneys.

2. The disagreements between nephrologists worldwide doesnt provide confidence and, being in the UK so "governed" by NICE, would seemingly make it difficult to get the drug at present, if required. But, if my mum's eGFR is unstable or falls further and/or her ACR continues to rise, we may still ask about it (subject to rba).

Im glad its working for your situation.

WinJ3 profile image
WinJ3 in reply toPontios

Sadly, health insurers may not cover SGLT2 Inhibitors until you reach (GFR 44 to 30) Stage 3b.

Zinnia70 profile image
Zinnia70

I hear you. I am on a renal diet pre dialysis. I watch the three P's ; protein, potassium and phosphorus, still, a lot of carbs. I was 30 GFR for 20 years so it can be done. I am 70 now.

orangecity41 profile image
orangecity41NKF Ambassador

Thanks for checking out on our web site for sharing , in our CKD journey, and information on CKD. Have you checked with your Doctor if a CKD diet is appropriate for you?

Holidak profile image
Holidak in reply toorangecity41

I am going to schedule an appointment with a dietitician/nutritionist and try it. Dr didn’t mention it at all, but I can try it.

orangecity41 profile image
orangecity41NKF Ambassador in reply toHolidak

My CKD diet is based on bloodwork for phosphorus, potassium, sodium and protein. Keep us posted. It was also adjusted later based on the bloodwork.

WYOAnne profile image
WYOAnneNKF Ambassador

The best place to start is right with the NKF website kidney.org Look at SUPPORT. They have menu suggestions for a kidney friendly diet and other info for you. Learn all you can about your kidneys and the disease you have. The more educated you become the better for you. It won't be so scary and doctors will respect you more, unfortunately. Doctor will know you did your homework and know what you are talking about.

I had strep throat at 9 years old and wound up with nephritis and in the hospital 2 months after the strep. Thirty years later I was in kidney failure. A biopsy showed I had FSGS - my kidneys were getting all scarred up inside and shrinking in size. It was from a deceased 16-year-old donor October1999. So, I am living LIFE almost 25 years later. I am truly blessed!

Blackknight1989 profile image
Blackknight1989

Just an observation because I am also guilty of the same issue…perhaps the CKD concern is overblown? Unless you have an active disease that is adversely effecting your eGFR maybe that isn’t a huge concern as it should remain relatively stable. (Baring any disease or condition that adversely impacts either level)…Like I am guilty of as well, maybe the CKD concern is a distraction from the real concern of weight management? At 57 the main concern I believe, as I had to be forcefully reminded of by my doctor not too many years ago, should be weight management, specifically maintaining a healthy weight through diet and exercise as that will have (if you are like 99% of most people) a bigger impact on number of years then the CKD at age 57. I have been stage 4 CKD since 1996 with eGFR of sub-20 since the same year, CKD or living with s sub 20 eGFR has had little impact n the past almost 30 years. Instead proper diet, exercise and weight management has allowed me to have (thus far) a health 30 year run with no major health issue (yet)…this isn’t meant as a criticism nor said in judgement but maybe the CKD concern is overblown as unless you have an active disease that adversely effects either or both those shouldn’t be a concern for decades. Maybe the CKD is a distraction for weight management and I only mention that because I am guilty of the same issue. If so, a lifetime of being overweight could potentially be much more damaging to health then a stage 1-3 CKD…at your current age (as I am as well with many of the same issues). Just a thought?

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