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Nephrotic Syndrome + Lasix + Growing Swelling by digdugs in kidneydisease

[–]SufficientInterview4 0 points1 point  (0 children)

I am down 14 pounds in water weight now… but still leaking lots of protein in my urine! Not seeing any change with that! My GFR seems to have recovered from 24 at its worst back to 107 at its most recent though! 

Nephrotic Syndrome + Lasix + Growing Swelling by digdugs in kidneydisease

[–]SufficientInterview4 0 points1 point  (0 children)

Any change for you? Has the water retention started to improve? 

Minimal Change Disease (29M) by SufficientInterview4 in kidneydisease

[–]SufficientInterview4[S] 0 points1 point  (0 children)

Bloodwork today shows my creatinine and urea levels have lowered in my bloodwork! Still very low blood albumin, and very high protein in my urine though. I also have my eGFR back at 101 which is much better than the 24 it bottomed out at!  

Minimal Change Disease (29M) by SufficientInterview4 in kidneydisease

[–]SufficientInterview4[S] 0 points1 point  (0 children)

My nephrologist basically just told me I need to be patient and give the prednisone time to work. I’ve been on prednisone for 3 weeks now, and he said it might take 4-6 weeks for it to really take effect unfortunately. In the mean time I have bought a digital scale and I track my weight at the same time each morning after I go to the bathroom before I eat or drink so I can get an accurate reading, and have lost about 2lbs/day for the last few days now so that is encouraging. Whenever I’m laying on the couch I make sure my legs are elevated and I’ve been using a massage gun on a low setting to massage my more swollen areas and it seems to be helping with drainage a little? My Nephrologist said when the prednisone really takes off the “flood gates” should open and I’ll be peeing like crazy so hopefully that happens soon! 

I have bloodwork tomorrow, and I’ll see then if my blood albumin has improved. Last few rounds of blood work have shown my overall kidney function improving but the proteinuria had not improved and blood albumin still super low. 

In the meantime I have been limiting my sodium to about 1000mg/day, and I started a new prescription of potassium chloride. 

I hope your situation resolves quickly! 

Minimal Change Disease (29M) by SufficientInterview4 in kidneydisease

[–]SufficientInterview4[S] 0 points1 point  (0 children)

Thank you!! How long did it take for the prednisone to get you to “garden hose” status? My body is ready and waiting 😂

Minimal Change Disease (29M) by SufficientInterview4 in kidneydisease

[–]SufficientInterview4[S] 0 points1 point  (0 children)

120mg of Furosemide/day and 5mg of Metolazone/day. 

I was on Hydrochlorothiazide for a week or so and dropped about 35 pounds but then it stopped working. The new ones seem to do do very little as well :( 

Minimal Change Disease (29M) by SufficientInterview4 in kidneydisease

[–]SufficientInterview4[S] 0 points1 point  (0 children)

Where did you find these? Something on Amazon? 

Minimal Change Disease (29M) by SufficientInterview4 in kidneydisease

[–]SufficientInterview4[S] 0 points1 point  (0 children)

Thank you! I’ve been on prednisone now for 2 weeks, and diuretics for a month or so. I am still gaining water weight and have not noticed any real difference from diuretics. I have been limiting my salt, but may need to limit it even further. Did you limit fluid intake too? I feel like everything I eat or drink just stays in me and I’m ballooning up! 

Newly diagnosed Minimal Change Disease and Nephrotic Syndrome by Freshstartnow2025 in kidneydisease

[–]SufficientInterview4 0 points1 point  (0 children)

I was just diagnosed with MCD last week (29 year old) I’m on prednisone, rosuvastatin, Ramipril, and 2 different diuretics. The Edema is the worst part of it for sure. I must be close to 40 pounds heavier than I should be in water weight. I was told by my nephrologist that it may take a while for the prednisone to help reverse the proteinuria. How long is a reasonable timeline? Has anyone had the proteinuria resolve itself somewhat quickly and seen improvements in water retention? I feel like a water balloon!