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

[shouty]

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 😊

[orangecity41 NKF 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 in reply to orangecity41]

Thank you for replying 🙂 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 NKF Ambassador in reply to shouty]

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 in reply to WYOAnne]

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 🤞a one off event. My Consultant is great & told me one of his patients hasn't had an episode in 10 yrs 😊 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 NKF Ambassador in reply to shouty]

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 in reply to orangecity41]

Great thanks again

[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 in reply to Pawsedagain]

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 in reply to shouty]

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 in reply to Pawsedagain]

See post below 😊

[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 😕 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