Not sure what to think

[akylasam]

My nephrologist had oput me on a BP medication -- BP was high and he thought that might bve impacting kidney function. I have been taking the BP meds for about a month. Today I saw my rheumatologist who also had done blood and urine tests (I have Sjogren's). He said everything looks okay but my eGFR is still low and creatinine increased a little. He did indicate he did not see any relationship b/w this and the Sjogren's.

So clearly, it was not just the BP issue. I feel fine and everything seems to be working normally. Could it be that this new number is my new normal after a bad kidney infection earlier this year? I never had an issue before that and an ultrasound shows no [problems as well. Is this something that I could (potentially) live with for a long time without other problems? Is it possible for it to rebound but it takes a long time??

I see my nephrologist again next momnth so will ask, but am wondering.

ETA: I had COVID at the time of my infection so have never really been sure what was what and even if I had COVID.... but this could be long COVID.

[orangecity41 NKF Ambassador]

You did not mention what your CKD level is. Here is a link to information on eGFR and CKD level. This might help you in discussion with your Nephrologist . kidney.org/atoz/content/gfr

[akylasam in reply to orangecity41]

I am stage 3A, I believe.

[Tolmezzo]

It definetively could be. If you had infection and now its recovered your kidney function should stabilize. But I strongly reccomend to mesure your pressure at home 2 time in the morning and 2 in the evening. Average target 130/80 possibly lower. BP is leading cause of kidney problem and if you had infection is even more important to keep it under control. In 6-8 month you can get confirmation if progression is stabilized. All the best.

[Tabookitty5]

Hello. I’m new here. I don’t have sjogrens but I match a lot of your other issues. Anemia is a big complication for managing possible kidney disease. It looks very likely that I used MIRALAX too often and it interacts with anemia and combined, dehydration and kidney damage begins at at a pretty high rate after oversight and treating symptoms for the past couple of years.

I also have an infection complicating matters.

Whatever y’all do, DO NOT USE MIRALAX for pipe cleaning. Especially if you might be anemia.

Flagyl is primarily the antibiotic for the infection I have and that ADDED FUEL TO THE FIRE.

BP has been high with no explanation. Tons of tests but nobody mentioned that I’m still using MIRALAX and if so, stop (it is in the list of prescribed medications).

I anticipate a possibility of full recovery by turning things around with my colon management using miralax being for convenience and not necessarily medically necessary at times. Bout done killed myself. No idea why I didn’t SEE WHAT I WAS DOING and put it together. But mental health “challenges” and addiction run in the family. Trying to CONTROL NATURE screwed me up.

Hope this helps anyone on this forum in some way 🙏🙏🙏

[htpi1543 in reply to Tabookitty5]

I am in a similar situation. Information you provided is very helpful. Thanks and god bless

[akylasam]

I am back to just taking metamucil -- which a GI doc prescribed after issues some years ago and it was fine. I have taken Miralax once in a while but not much.

[Tabookitty5]

Good. One less thing to complicate matters. I’m also going to continue on getting BP down )I wasn’t taking all of the meds she thought I was taking. I had misunderstood and dropped one med for another when it was meant to be included, so I don’t have my BP down and stable but expect better results this week.

Hope you’re starting to feel a bit better about your plan of action. 👍

[Blackknight1989]

You need the trend and if the eGFR numbers stay good it is your new number. I have 2 studies posted separately that discuss the inaccuracies of eGFR and while that is not an issue in diagnosis and tracking kidney health it is misleading as you can see with all the “can CKD be cured” and “want to share great news” near the top of the forum. EGFR is simply used to diagnose CKD first then track kidney damage. Most probably our eGFR is 30/50% accurate to our mGFR (measured gfr) mGFR is the gold standard but is complicated and takes a long time to track. NKF KIDGO guidelines and NIKKD.gov recommended eGFR never be reported to the patient OR the physician as a whole number because it become the entire focus of both at the peril of all the additional lab values needed to properly manage and treat CKD. However, it has become just that so when folks make positive changes that does raise eGFR some yet get a number 30 points higher we get all these “cured” and “I have wonderful news to share” when the variation in eGFR is expected and normal but does not indicate any true increase in kidney nephrons.

In both AKI and CKD you damage kidney cells. In CKD that is NOT reversible with current technology as kidney cells or nephrons ( special because of their design to be our blood filter) do not regenerate as skin or liver cells do. So let’s say your eGFR numbers average stage 2 over the course of 4/5 lab draws and let’s assume that we are all born with 1,000,000 nephrons in each kidney. If eGFR is 20% lower than a normal value that means you now have only 800,000 nephrons per kidney that continue to operate as normal. The other 200,000 are dead and those never return thus the reason you cannot “cure” CKD. In AKI many times they do recover when the toxin causing the below normal labs is identified and removed. Though in my case my kidney recovers some but never above stage 4.

So in your case sounds like AKI not CKD and since you fixed the issue if number average normal that should be enough to say you are at that level now. If truly CKD it would only represent “unloading” the remaining nephrons that makes 800,000 perform as 900,000 etc. the underlying damage is done and when you slip in one of the lifestyle modification that lead to the improvement it will show in labs…. I hope this helps some and I wish you the best!