Hi I have taken wysolone 20mg(prednisone) for 5 months to decrease the protein eventually it has decreased now my nephro has gradually tapered the dose to 15 10 7.5 and currently at 5mg from last 2 days can anyone please advise any tips you know how to decrease moon face side effect sooner please… #IGANEPHROPATHY #Moonface #prednisone #steroidface

28M - UK

This is such a tricky thing to put down into words. After finally following up my micro-hematuria & high BP, I’ve at long last had a diagnosis of IgA. Total MESTC score of 4, still awaiting the exact details. Devastated is an understatement. My Nephrologist is on the ball and has already mentioned moving forward with a recommendation to immediately place me on the transplant list, and says that we may be able to hold off Dialysis if a live donor comes forward.

How did you get over your diagnosis? I currently feel like I’m in a state of shock.

i 've been end stage for 7 years, but I haven't been prescribed diuretics. Is this common?

T2 diabetic. Yesterday I had my 1st appt. with a Nephrologist. Only because my Neurologist said, hey have your GP set up an appt. That took a year. I'm 61F. So I see this nice young man and he says, "what do you know about your kidney disease?" And I say " nothing." He's in shock. "What do you mean?" And I tell him, The doctor never said anything. It popped up on the hospital print out a few years ago. " He never discussed your kidneys? " Nope. We just kept playing with the insulin.

So. This poor bastard. Who just met me. Had to explain to me what the numbers all mean for each stage of kidney disease. Which I'm sure all of you know. And he kept going, going, lower, lower and he finally got to mine. Mine is 30. 30. 1 more point and I'm stage 4. Nobody sent me to a specialist until my neurologist brought it up? I'm at the point where this guy is saying " nowadays people can live long lives with stage 4 kidney disease..."

And I'm alone. Processing this. I'm sad. Just, it's too much.

Mods can delete this if it's not appropriate.

Hey everyone,

I’m 37M with CKD Stage 3a-3b (fluctuates depending on weight). I have a right hip FAI labrum tear that I’ve been dealing with for 3 years. Can’t take any painkillers because of my kidneys — it’s been a rough ride. I finally have an arthroscopy scheduled for December at Women’s College Hospital (surgeon is from the Schroeder Arthritis Institute at UHN).

Here’s the problem: after the surgery, there’s a risk of Heterotopic Ossification (HO) — basically microscopic bone fragments left over from the procedure can grow into actual bone in the soft tissue. The standard prevention is 21 days of NSAIDs post-op. My surgeon gave me three options: Celecoxib 200mg BID, Naproxen 500mg BID, or Indomethacin 25mg TID.

Obviously, 21 days of any NSAID with CKD is not ideal. My nephrology team (at Sunnybrook) reviewed it and agreed to Celecoxib with kidney function monitoring, but they didn’t give me a clear answer on what happens if my kidney function drops during that 21 days. No contingency plan.

I’ve been reading about single-fraction radiation therapy (7-8 Gy) as an NSAID-free alternative for HO prophylaxis — it’s apparently used routinely for total hip replacements. Zero kidney impact. But when I brought it up with my neph team, they said that’s the surgeon’s call, and I’m still waiting to hear back from the surgical team.

My questions for anyone who’s been in a similar situation:

• Has anyone with CKD had to take a course of NSAIDs post-surgery? How did your kidneys handle it? Did your team have a monitoring protocol?
• Has anyone had radiation therapy for HO prevention instead of NSAIDs? How was it arranged — did the surgeon refer you to radiation oncology, or did you have to push for it?
• Any other alternatives I’m not thinking of? I know there’s no magic third option, but I want to go into this surgery with a solid plan.
• For those in Ontario/Toronto — did you have any trouble getting the surgical and nephrology teams to coordinate? Any tips?

I’m currently on Candesartan 4mg, Atorvastatin 10mg, and Dapagliflozin 10mg. Also need to make sure they don’t give me ketorolac (Toradol) or morphine during/after surgery.

Appreciate any insight. This sub has been helpful before and I’d rather go into December with as much information as possible.

I (m57) am on my way to a long day at the hospital.

My ckd has declined so fast in the last few months. Even my Drs are surprised by the speed. I was was on a long slow decline until a hospitalization for diverticulitis sent my kidneys into acute status and never came out.

My 1st stop is a consultation for the implantation of a PD catheter. Then it is off to surgery for a chest catheter. An hour after that dialysis.

I certainly hope it gives me relief from all these symptoms.

Nausea and vomiting has become my new normal. I go in to use the toilet, I bring a bowl with me as it comes out both ends at the same time.

I don't eat, because I don't want to vomit anymore. My throat has been painful for over a week.

All these toxins has my mind and emotions so churned up, I cry at everything. Happy or sad news. I cant carry on a conversation because my mind can't find the words anymore.

Physically, I can't push a grocery cart from the store to the car without needing to stop and rest.

Part of me thinks it would not be so bad if I did not wake up in the morning.

So am really hoping for relief after this week.

I am female 35 years old. In July of this year, I noticed my urine was tea-colored and sometimes pinkish. I went to a urologist who ordered a CT scan, which came back completely clear. I don't have any other symptoms—no diabetes, no high blood pressure,no fever, or swelling (edema).

​The urologist recommended I see a nephrologist, who diagnosed me with acute glomerulonephritis after an ultrasound and lab work. My tests showed 1,500 mg/dL of proteinuria and hematuria, though my initial creatinine level was normal.

​My nephrologist prescribed Atacand and Forxiga. Shortly after starting them, I suffered severe adverse effects from Forxiga, including vomiting, chills, stomach pain, nausea, and headaches. I informed my doctor, but he assured me it wasn't from the medication and told me to continue taking it.

​After nearly two months of feeling terrible, I decided to see a second nephrologist. She advised me to stop Forxiga immediately, as I was severely dehydrated. New lab work revealed that my creatinine had jumped to 2.07 due to the severe dehydration caused by the medication. Is there a hope on my case? I feel desperate

I’m pretty familiar with it just not too knowledgeable about it.

This is part of my lab tests that I get two twice a year. And it’s generally right around the same number each time, very small fluctuations.

I know serum creatinine can fluctuate a decent amount with things like poor sleep, or dehydration or stress, exercise, etc… And sometimes my creatinine does fluctuate up or down a good amount, but that is to be expected and I can usually figure out why. But this time my Cystatin C had a pretty large increase which doesn’t usually happen. It went from .85 to .98. And my serum creatinine stayed exactly the same. From what I understand Cystatin C is pretty stable and not a lot of fluctuations like creatinine.

Anyone with knowledge on what can cause a fluctuation in cystatin c like this? Obviously kidney function decline could be one.

For context, I have damaged kidneys from prior uncontrolled high blood pressure that is now very well controlled and has been for several years. Last couple years my 24 hour urine protein has been right around 255mg/24hrs which is a very respectable number especially since it has been stable for quite some time. I’ve had CKD for probably 15 years now.

I know the correct answer is do a retest and ask my nephrologist what it could mean. But I wanted to see if anyone on here has knowledge with this since we are the ones that are actually living with CKD.

My dad had a kidney transplant 5 years ago. In the last week, his fistula has stopped working, and he has it scheduled to be removed tomorrow. but as of a few days ago, he has had continued swelling in his hand and pain around the area also a little purple around the area. Is it okay to remove it right now? Has anyone experienced this?

Is there a connection between high lactic acid and ADPKD recently during my labs I have reoccurring high lactic acid and the other day I wasn’t feeling well and I went to the hospital and my lactic results were critical with a lactic acid of 4.2 my GFR was also the lowest it’s ever been
TYIA (:

Three years ago, after my catheter insertion surgery, I experienced cramps and soreness around the incision site, similar to menstrual cramps. Even getting up, bending over, and finding a comfortable sleeping position required a gradual adjustment.

Now, manual PD has become a part of my daily life. Before each exchange, I prepare everything I need, especially the transfer set cap, so I don't have to search for things during the procedure. Hand hygiene and keeping the work area clean are also crucial. I follow the cleaning methods taught by my PD nurses and carefully handle the tubing connections to avoid contamination.

I think many people, like me, need time to adjust to the catheter. At first, it felt like having something extra inside me, and I worried about accidentally pulling on it while moving. Later, I gradually got used to it and learned to secure the tubing to prevent it from swinging around or getting caught on my clothing.

When I first noticed redness around the catheter, I was alarmed and immediately contacted my doctor. After examining the area, the doctor told me there were no signs of infection, but my skin was more prone to irritation from dressings, and suggested I try silicone foam dressings. I usually use Dimora because I feel it's more affordable. However, if you also experience redness around the catheter, it's best to contact your PD care team promptly to check for infection.

I know that starting PD can take a lot of courage for many people. But believe me, once you take that first step, you'll find that it's just one part of life, and there's so much more to life than PD. I hope my experience can help you.

My wife has been discharged from the hospital already. The last ultrasound showed very good blood flow on the transplanted kidney but they can’t say for certain how it is at the microscopic level. My wife is able to pass plenty of urine on her own. The transplanted kidney remains viable. The consultant already gave her three doses of ATG and resumed Tacrolimus. The consultant it is not FSGS but vascular rejection that is causing why the transplanted kidney is not functioning as it should. They are hopeful that the creatinine that is still high will start to come down once the transplanted kidney has adjusted to the ATG and Tacrolimus.

We’re hopeful but very scared, disappointed, and anxious. It’s really depressing.

In the start of the year my dad's creatinine was 1.2 and now when we checked again a few days back it was 9.1 and it keeps on increasing , his bp, diabeties every thing is normal, he has no symptoms the doctors did so many test still can't find the cause , now the doctors are saying he might need biopsy but can't do it now as creatinine is high and we have to put him on dyalisis first . my father is not agreeing to do this , he says he doesn't feel a thing and he's ok (he is a regular drinker but the doctors said alcohol is not the reason)

Hi all

FSGS, end stage ckd on haemodialysis. 38 yr old male.

I’ve recently been noticing tingling almost like pins and needles in my fingers and feet especially after waking up in the morning and if I’ve been sitting down for a little while.

I also notice sometimes my legs are a bit wobbly when I get up. I try to stay active, going for walks and working out but this has just started recently

Been on dialysis since March so I am still learning of all the weird and wonderful symptoms that come with CKD or if this is something else that I need to get checked out

Are the symptoms I named common amongst any of you?

Big day today.....having my fistula fitted in my arm. To say im bricking itvis an understatement.

Hi guys. This is a bit of a vague request for advice, so apologies. My husband is starting overnight PD at home this week. He also works full time and we have very young children so he has so much on his shoulders right now. It’s been a lot for one person to carry.

I’d really like to do something for him, to make his life easier in any way. Life on PD and dialysis in general is so new to us. I’m curious if any of you who have been on dialysis have purchased any health accessories, downloaded anything like health tracking apps, developed any tricks or tips for making things easier on you. Anything you wish you had bought yourself sooner or ways you’ve changed your routine that would’ve been nicer to know from the beginning if you know what I mean? I really appreciate any tips.

He is struggling currently with low iron (and fatigue), lack of appetite besides craving sugar, drain pain, constipation, headaches, body aches, lack of interest in cooking/food, logistics of getting to and from appointments amongst other things. Thank you

Question again

I just saw Mt Sinaj nephrologist
I have RAS w 90% blockage and shrunken kidney
So stent won’t work
I also have bad POTS
With standing vitals 190/110 p 160 he tells me to exercise!
Wth
How idiotic
Proceeds to say how healthy I look and then says how complicated a case I have
I showed him all the pics of me and edema
and he says stop
The Lasix!
I’m flabbergasted at the ignorance of these drs when it comes to pots and complicated cases in general
Ughh I’m not listening to anything he said
Off to Sinai Cardio now
Can’t wait to hear his ignorance as well
Sorry for rant but tired of these major institutions knowing nothing abt POTS and giving bad advice

As a update of the above post , I have rebiopsy planned on coming Monday . My leg and stomach swelling is gone already as the doctor started steroids , tacrolimus and lasix . Protein leakage seems to be reduced . My doctor mentioned he wants a rebiopsy because he needs to conform whether it’s mcd or fsgs , as in the previous biopsy it’s mentioned as both mcd and fsgs . All I pray now is , it should not be fsgs . Because I came across posts telling about fsgs and its impacts and it really scars me a bit . Now what should I do in these upcoming days so that I will not get kind of relapse again? Because I still remember I was doing all things properly

Wondering if you would apply for a job knowing you might be on dialysis in the next year?

My nephrologist recommended this injection method to help with protein in urine to stop or lower prednisone. I’ve never heard of this. Anyone know how it works and side effects? It would be very 6 months

Has anyone experienced a drop in eGFR after taking ibuprofen?

I’m trying to understand a change in my kidney bloodwork and would appreciate hearing from others who have experienced something similar.
My results:

July 2026: eGFR 104, creatinine 0.93
October 15, 2026: eGFR 84, creatinine 1.11
Potassium increased from 4.0 to 4.9, still within the lab’s normal range.

I’ve been taking ibuprofen intermittently over the past month for pain following clavicle surgery, but I stopped approximately one week before my blood test.

On the morning of the test, I was fasting and had coffee but no water.

I’m concerned about the decline in my eGFR and wondering whether ibuprofen could have contributed, even though I had stopped taking it a week earlier.

I’m planning to contact my provider about repeating my kidney function tests and checking my urine albumin-to-creatinine ratio.

Hi guys, I am 26M with ckd stage 3b, i have protein leakage issue and my UACR is in range of 400s right now, last year it was 1000 when i got diagnosed with it. I am on faxriga, sartel 20mg, finerenone 20mg meds.

My main goal is to gain weight and I am struggling right now to gain some .

So i thought i would try to build some muscles along with my condition, has anyone ever actually like build good muscles with ckd ? I would love to know if anyone has some tips on this, would be really helpful

Thanks

I recently set a new world record (unofficial) for:

The fastest ever half marathon run by someone on Dialysis

1:46

At The Manchester half Marathon

Kidneys don’t work but the legs definitely do!!

Hope this can inspire those who need it to get out the comfort zone even when the odds are stacked against you

@niv3n on Instagram for all
kidney / dialysis / fitness / lifestyle content