FLOW and the kidney endpoints

Started 19 August 2025 · 22 replies · 202 hearts · read 3.8k times

BettinaGraz, AT · 19 August 2025

11 months ago

FLOW and the kidney endpoints — putting it in its own thread so it does not get lost in the check-in.

I have read the paper and I am not sure I have understood it.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

Sorry for the length. If anyone has been here, I would very much like to hear it.

AmmiKarachi, PK

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

GwilymCaernarfon, UK

Gently disagreeing with the opening post, or rather adding the other half of it.

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

PatrickLimerick, IE

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

SunilFacilitatorBirmingham, UK

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

TiborBratislava, SK

What the reply above described happened to me too, in a slightly different order.

What helped was lowering my own expectations of the week rather than trying to hold the week together.

EphraimBrooklyn, NY

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

8me too 1

GilTel Aviv, IL

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

NissaHaifa, IL

Gently disagreeing with the reply above, or rather adding the other half of it.

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

JuniperMachynlleth, UK

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

AnnaAthens, GR

#10

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

PamSouthport, UK

#11

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

PetuaKampala, UG

#12

Yes to the burping. It is real, it is unbeautiful, and it does settle.

6me too 9

JunoBrighton, UK

#13

the reply above — yes, and the bit that took me longest to accept was the next part.

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

OrphBath, UK

#14

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

SaoirseKilkenny, IE

#15

the reply above said something I want to sit with for a second.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

TarqWindsor, UK

#16

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

PriyaReading, UK

#17

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

BlueStroud, UK

#18

Reading the reply above, I recognised more of that than I expected to.

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

NilsUppsala, SE

#19

Please do not read the comments under news articles about this. I lost a fortnight to that.

NadjaBelgrade, RS

#20

Building on what the reply above wrote rather than answering the original question.

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

SunilFacilitatorBirmingham, UK

#21

What the reply above described happened to me too, in a slightly different order.

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

PádraigGalway, IE

#22

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.