minimal change disease relapse???

[jacjac52]

hi i relapsed in july and was put on 50mg prednisolone for 4weeks then 40mg for 4weeks then 25mg for 1week 20mg for 1week and so on til i got to 5mg. My consultant has recomended that i stay on 5mg indefinatly as i am awaiting a lung transplant and cannot have one if i am on large doses of steriods, so he is hoping that the 5mg will keep me in remission. However, yesterday morning i noticed foam in my urine and done a urine dip test and it went positive up to the first marker, this morning same again but up to second marker. The funny thing is in the evening time when i retested on both days the test was negative. Does anyone know what is happening, I am so near getting my so badly needed transplant that i fear another relapse will ruin my chances.

[jacjac52]

Thank-you so much for your reply. I am still waiting to see my consultant. My maintenance dose is 5mg and have only been down to 5mg for 2wks. I am told I have to stay on this dose hopefully to prevent relapse, I hate the thought of going back on 50mg etc. Funny thing happening now, no protein for 2 days then++ this morning, do you know what might be happening with me, many thanks, ps good luck with your Nephrosis, horrible is.nt it.

[badbrad44]

Hello,

Alot of a relapse depends on what your maint. dose is.  I have lived with Nephrosis since the age of two and am 48 now.  Prednisone has kept me alive and my maint. dose is 20mg daily.  If I drop it lower, even to 15mg,  I have a relapse within a couple of weeks.  
So I guess you keep your fingers crossed and hope you don't relapse.
Sometimes, like right now, I never wavered from my dose, and am having a relapse.

Good luck.