New Nephrotic Syndrome. A nurse who used to... - Kidney Disease

Kidney Disease

12,450 membersโ€ข5,135 posts

New Nephrotic Syndrome. A nurse who used to work in Renal medicine how ironic. Preliminary diagnosis of Minimal Change Disease

shouty profile image
shouty
โ€ข11 Replies

Home from hospital with added Covid but hopefully only minor symptoms to add to the mix. On Prednisone 40mgs Frusemide Atoravastatin Ramipril Calcium Omeprazole. Does anyone else get awful leg pains. Prescribed Gabapentin at night which helps & codeine in the day.

Waiting for last in-depth analysis of kidney biopsy hopefully in couple of weeks. Have lost over 20kg in fluid weight now & gave ankles & knees again ๐Ÿ˜Š

Written by
shouty profile image
shouty
To view profiles and participate in discussions please or .
Read more about...
11 Replies
โ€ข
orangecity41 profile image
orangecity41NKF Ambassador

I have CKD 3b, and have neuropathy problems, and take Gabapentin and it does help me greatly. Helps me sleep good also. Keep us posted on your test results and how you are doing.

shouty profile image
shoutyโ€ข in reply toorangecity41

Thank you for replying ๐Ÿ™‚ It's great to have found folks on here. I have been a member of the Lung Forum for couple of years as got Bronchiectasis and yes worked on a Respiratory ward too. May I ask what dose Gabapentin you take please as I was started on low dose while taking other painkillers but keen to reduce tablets as much as possible soon

WYOAnne profile image
WYOAnneNKF Ambassadorโ€ข in reply toshouty

Hope you are feeling better since coming down with COVID. Keep us posted on what your kidney biopsy shows. It is to your advantage to find the cause of your kidney failure. I had a transplant 21+ years ago. I have nerve pain in my L arm - same arm that had AV Graft for dialysis. I take Gabapentin 3 x a day. My nephrologist said I could go up to 900 mg daily - so take 300 mg tabs 3 times daily.Always make sure your nephrologist knows the meds you are on and OK's them. From your list, seems like all are OK for kidneys. I take many of the same meds you do.

Take care.

shouty profile image
shoutyโ€ข in reply toWYOAnne

Thanks for replying. Am hoping the final diagnosis will be what's known as "Minimal Change Disease" where whatever ( sometimes never find cause) caused the Nephrotic Syndrome to happen can be ๐Ÿคža one off event. My Consultant is great & told me one of his patients hasn't had an episode in 10 yrs ๐Ÿ˜Š but did warn me it can be a relapsing condition. I never believed my body could hold so much excess fluid. From around 8 & a half stone I ballooned up to 13 stone & it was agony on my legs & groin. Even gave me pleural effusions in the lungs. Will chat to Dr about increasing the Gabapentin as only on 100mgs at night and that's when neuropathic pain is the worst. Thanks again for your advice

Hattie

orangecity41 profile image
orangecity41NKF Ambassadorโ€ข in reply toshouty

You are welcome. I started out low does also at 100 mg per day, and slowly increased over several years to total 500 mg's per day, but not all at one time.

shouty profile image
shoutyโ€ข in reply toorangecity41

Great thanks again

Pawsedagain profile image
Pawsedagain

So pleased to hear that your symptoms have improved. I was diagnosed myself with Nephrotic syndrome having been ill for months. I'm going for a kidney biopsy in 4 days. Hoping to get some advice on this condition.

shouty profile image
shoutyโ€ข in reply toPawsedagain

I had biopsy & have been told could be "Minimal Change Disease " where they couldn't find obvious cause but the labs do 3 different tests on the sample & I'm waiting for test 3 which can take up to 2 months to come back.I am under great Consultant who knew I used to be Renal nurse. He told me sometimes people just have a one off episod that resolves with treatment while others relapse.

If you want to ask anything please do

Hattie

Pawsedagain profile image
Pawsedagainโ€ข in reply toshouty

How are you doing now Hattie?I have lost 14kg but am still carrying a lot. I was diagnosed with Primary Membranous nephropathy. An autoimmune disease. Which like yours can relapse.

What was your final diagnosis .

Hope you are still doing well.

shouty profile image
shoutyโ€ข in reply toPawsedagain

See post below ๐Ÿ˜Š

shouty profile image
shouty

Hi great to hear from you. I'm doing ok on the Nephrotic front. Still on steroids reducing very slowly which is ok apart from the puffy face & double chin they've given me ๐Ÿ˜• Its the Long Covid that's the worst thing. Still odd sense of taste, bad fatigue etc. Oh the final diagnosis was Minimal Change Disease.

It's great you are losing the fluid weight are you on Diuretics still ? Still can't believe how much excess fluid our bodies can hold. Need to take strong painkillers for leg pain but Consultant I saw recent was lovely when I saw her and asked how long pain would continue. She said they can't say but to remember how badly the poor old legs were stretched and to be kind to myself &if I need the tablets just take them & not worry about it.

Enjoying the lovely sunshine & sitting in the garden x

Not what you're looking for?

Moderation team

See all
PattyM_NKF profile image
PattyM_NKFModerator
DorisL_NKF profile image
DorisL_NKFModerator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.