Ckd 2 at 27, GFR 74-79 and Farxiga question

[Live4Hope]

I met with my Nephrologist and asked him about some of the new class medication that is out which has supposedly shown 40-50% success in managing CKD. He told me that since my GFR didn't drop into the 60s he doesn't believe it is necessary at this time because he says he isn't convinced I will progress after looking at all my test since February.

Personally, I think it'd make more sense to air on the side of caution. I asked him again a few days ago and he said the same thing but not with much explanation as to "why" he doesn't think I need it. Is there a risk or something that I'm unaware of? I've looked into it and overall it seems harmless to take Farxiga or Jardiance.

[Darlenia]

Jardiance and Farxiga are medications originally developed for diabetics. They assist in weight reduction and lowering or stabilizing blood sugars (glucose). For nondiabetics who present decent numbers in labs (other than kidney function) and weight, these medications can have negative results - increasing utis and fungal infections, dropping glucose levels too low, increasing dehydration, etc. These issues, too, can also stress one's kidneys, damaging them further. There are no "harmless" meds; they all have their good and bad sides. As a wise neighbor told me, "There's a little poison in every pill". Make sure the positives outweigh the negatives.

[Live4Hope in reply to Darlenia]

Thanks for your input! That's a reasonable answer. I'm going to have a word with him about being more specific on the "why" he picks certain treatments over others.

[userotc in reply to Live4Hope]

Darlenia is right about the risks and its good to know that nephros are balancing risks & benefits, as they should. My mum's does likewise 👍 and she is currently drug-free after 14yrs with CKD 3🤞

Note link below which includes: "With treatment and healthy life changes, many people in Stage 3 do not move to Stage 4 or Stage 5" 🤞🤞 Hope it encourages you!

kidneyfund.org/all-about-ki...

[oceansplash in reply to userotc]

May I ask has she been diagnosed with any type ckd such as fsgs, glomeritis, polycystic etc.?

[oceansplash in reply to oceansplash]

Sorry hadn't got to you next reply, I see albumuria now, so is it minimal change syndrome?

[userotc in reply to oceansplash]

The cause of her CKD has never been disclosed which Is one of the many gaps in our knowledge despite her having a full medical team. But it's on the list of questions for the next consultation in next month or two.

I suspect her nephro won't know or say it's irrelevant but we'll see. Any views/advice?

[oceansplash in reply to userotc]

I thought I read she had albumeria. I had around 1500 protein in urine when diagnosed, now it's down to around 4-500. If it was high like mine was I would've thought she'd have a biopsy. I did. That's how I found out I have fsgs. If she has protein in urine I would also think she'd be on an ace or arb. She must not have any. I would say more power to her and keep up the good work!

[userotc in reply to oceansplash]

Yes she has accelerating albuminuria but note she's only 1 kidney which may account for it. I posted about that on here 6m ago in a call out to single kidney-ers (maybe you saw it?) with scientific documents about albuminuria, proteinuria etc referenced.

Unclear what you are referring to re 1500 proteinuria but assume its total protein? Mum's varies between 0.12-0.23g/l (or 12-23 mg/dl) with her 24h urine 0.26-0.45g and her nephro is unconcerned about that . Our urinalysis dipsticks indicates neg or trace, at worst. But her increasing urine microalbumin reached 160 mcg/ml in January with next test due this week.

Again her nephro appears relatively unconcerned about this. Re ace/arb drugs, he believes medication is unnecessary with her blood pressure is controlled at <130/80 (NB latest 115/75!) as it may make it too low. He said it should reduce protein but no guarantee and likely give side effects. As with Liv4Hope's nephro, I applaud his risk-benefit assessment on that, as indicated above. What drugs are you on?

[oceansplash in reply to userotc]

I remember reading your single kidney function post it but looked back again didn't see your reference as far as literature explaining this. I did see your post about single kidney and higher numbers but I thought this only pertained to creatinine and gfr not albuminuria/proteinuria. I have one functioning kidney myself, the other one is shriveled up and measures around 7 cm. Don't know if it functions at all or what.

My ratio is lowering at this time. Currently my protein/creat is 386 mg/g on a scale of 0-200, and albumin is album./creat 146 mg/g on a 0-24 scale. Don't know how that compares to ml/m to mg/m but hers sounds like it's a lot less than mine. Doctor keeps increasing the losartan and now on 100 mg. and expect it to drop albumin around 20% from what I read. (I was on 50 mg.) Then he said Farxiga too - which is $200 mo. and I am waiting on this for now. I hate meds and scared of taking it - especially having low sodium levels 130 mg vs 135-145 on electrolyte test. It's gone down to 125-6 before and makes me really feel bad.

The losartan doesn't really lower my bp much. If her's is in the teens I would say no but if the mid twenties I'd say take it. I think the sweet spot for us is like 118/80 or something like that..

In a perfect world we'd have all the answers!

[userotc in reply to oceansplash]

To see the referenced evidence, you must view the blog linked in my post. For example, re albuminuria, it states under Test Results "increased albuminuria was reported as far back as 1988" for 1 kidney. This reference then opens after clicking onto the comment sciencedirect.com/science/a....

The same for the rest of the blog.

I think mum's protein/creat is about the same as yours based on her last results in January. It was 45 mg/mmol which I estimate is ~390 mg/g using mdcalc.com/calc/3945/urinar...

Her album./creat is higher at 277.88 mg/g via conversion scymed.com/en/smnxps/psdjb2... otherwise I think the urine results compare quite well.

Any other comments on my earlier post/the blog? For example, are you diabetic? If so, the blog indicates albuminuria indicator may more important for you than mum?

Were you given losartan for high bp - if so, what level was it before?

[oceansplash in reply to userotc]

Thanks for the links. Interesting.

No I'm not diabetic. BP had been contained to like 135 through meds before diagnosis. Since then it's running around in low 120's with losartan and 5 mg. amlodipine. It doesn't seem to decrease when I increase the losartan. It does flucuate going into teens then mid twenties but overall in low 120's. Through diet my gfr has increased but actual progression I don't know. All I know is the lower the protein in urine the better off I am. Also making sure to keep phos and potassium in mid range though it's tough to do.

That's about it I guess. Enjoyed going over these points with you. Feel free to ask or suggest any new info you may come across!

[userotc in reply to oceansplash]

Yes, keep in touch and we can compare notes as new results come in. I've followed you now.The comparison in urine results is close. Even acr is reasonably similar at 600% and 900% over range!. Maybe no surprise with both having 1 kidney. But, as you're non-diabetic too, albuminuria may also be less relevant than proteinuria (as per blog).

Any new info I come across will likely be natural as mum continues the NT protocol. Note that mum was able to wean off her BP medication years ago which we attribute to that. But Im also undertaking a comprehensive risk-benefit assessment on SGLT2s too, in case they're offered later.

[userotc in reply to Darlenia]

Hi Darlenia. Good input (hope you dont get much backlash from some!).

As you may recall, the situation is trickier for my mum being at stage 3 and with accelerating albuminuria (but youll recall, she has a single kidney which may be a factor). So I continue to monitor SGLTs and am in the middle of a comprehensive risk-benefit assessment. Hopefully she wont need to be offered medication after latest tests this week, so forcing a decision 🤞

[nonna70]

It sounds as if your neph might use those drugs if they become necessary. Be grateful that you are functioning at a level that they are not needed.

[Live4Hope in reply to nonna70]

My main concern is that I don't want to get to the point where it is necessary where the medication could prevent further issues.

[oceansplash]

My doc wants me to try however, the company warns if you are following low salt diet or low in sodium it may be dangerous. Dr. never asked me about diet so I don't trust his judgement at this point. I also have good blood sugar levels and don't want to get hypoglycemic. So I'll be going over my concerns next visit 3 months away. My gfr has raised to low to mid 70's through diet from a low of 51. Now because I have low sodium levels he want me to cut water to 34 oz. Personally, I think it's the losartan that's causing it. I'm weary of all drugs period!

[Christi65]

I can tell you my gfr is 15. When it was at 22 he stopped my metformin and started farxiga. I wish I would have been on jardiance before all this, like in January of '23 when it was in the 60s. Can you get a second opinion?

[Live4Hope in reply to Christi65]

I probably can but I don't know any other nephrologist in my area. I'll look around.

[oceansplash in reply to Christi65]

Thinking about getting a second opinion -- or a new doctor! He acts like he doesn't have time for kidney patients unless they are in stage 4-5. Anything I say he says "it's not your kidneys"..

[Christi65]

Check with your insurance company too. Hope you find some answers.

[nonna70]

Perhaps you want to wait in case you get in the 40s. I certainly agree that 15 is too low.