Minimal change disease

[CagePow]

I developed nephrotic syndrome whilst heavily pregnant at the end of last year. It's suspected to be Minimal Change Disease, but not confirmed via biopsy due to the pregnancy. Under control now thanks to prednisolone which i am starting to be weaned off. I can't find much information about the disease (in adults) so I'm wondering if anybody has any advice?? Thanks in advance

[MsAmyM]

I agree there is not much information or research about adults with this disease, as it’s rare. I was diagnosed with MCD via biopsy in 2006 (age 41). My nephrologist prescribed prednisone but when I relapsed I was prescribed other immunosuppressants (cellcept, cyclosporine). I was in remission and on no meds for 12 years when I relapsed in 2021. Another biopsy, prednisone, tacrolimus, now in a clinical trial with a medication similar to rituximab. It’s scary being immunocompromised with Covid, so I’m still masking and avoiding public places. MCD is very treatable, but relapses can occur, especially in adults. My current nephrologist specializes in glomerular diseases and apparently in adults, MCD and FSGS are basically mild and severe forms of the same disease. What’s important is whether you respond to prednisone. If you do, your case is probably mild and treatable. There’s more research about FSGS if interested. Your prognosis is probably very good. Fortunately it’s rare to end up with ESRD and needing dialysis. Good luck!

[CagePow in reply to MsAmyM]

Thanks so much for your response MsAmyM, really appreciate it. Yes i seem to have responded to the medicatiom really well which is a good sign. I had a mini relapse over Christmas when I also had a chest infection. Maybe i should have made the link but no-one has told me I'm considered immunocompromised or what steps to take... is it because of the condition itself? Or the medication? (Or both?!) that the immune system is low? I am fairly careful as my baby daughter has a heart condition but it's hard as i have a germ-filled toddler too!If you don't mind me asking, could you identify a reason for your 2021 relapse? Was it following another illness? Just trying to understand the link between other illnesses and relapses.

Thanks again, stay healthy and good luck with the trial!

[MsAmyM in reply to CagePow]

As a matter of fact, my relapse coincided with a bout of colitis that lasted for months and sent me to the hospital for several days. I don’t know if they were directly related, but it’s possible. The doctors tried to blame the colitis on the tacrolimus, but the colitis symptoms started before the tacrolimus. So they were wrong, but doctors didn’t listen to me. It’s been an ordeal.

My nephrologist told me in 2006 that the condition itself causes immune suppression, but they don’t mention that much these days, it’s more to do with the meds.

Treatments for this disease like prednisone, rituximab, and other medications suppress your immune system so you want to be extra careful while you’re taking them and for a while after, especially now with Covid still in the picture. Doctors should have told you this. When I was first diagnosed in 2006 they just told me to wash my hands a lot and avoid sick people but Covid is a game changer. You’re at a higher risk of both catching it and getting very sick from it.

[CagePow in reply to MsAmyM]

Thank you, i will up my game and raise it at my next apt. Many thanks