Nephrotic syndrome and lupus aanyone else suffer this awful situation please any answers would help feeling fed up

[Danimccrea]

Nephrotic syndrome and lupus please

[Poshcards]

am sorry, i haven't but I do have Lupus, so sending hugs xx

[Spanielmadlady]

Hi I have class v lupus nephritis and i am under a kidney specialist for it.rheumatolgy look after the lupus . SML x

[LloydE]

Good Afternoon Daniccrea, are you on any medication? It may not be as bad as you think. You will have to go on a salt free or very reduced salt diet. Not as bad it seems your taste buds adjust after a few weeks. You can use certain salt substitutes. May need to watch your potassium intake, like red meat once a week (if you eat meat that is). Stop smoking if you smoke. Kidneys are very resilient.

[Danimccrea in reply to LloydE]

Hello LloydE thank you kindly for your reply, so sorry for the late reply, I've been feeling really unwell, I'm not on any medication other than water retention tablets, as they can't find the cause of my nephritis my nephrologist will not start me on medication until he finds the cause, so I'm pretty stuck in the lengthy process of tests biopsys and ruling things out as my lupus tests come back negative 😕 its never been discussed dietary needs but I've took your advise and reduced my salt intake further as I had read this would be best a while ago. I don't smoke or drink for over 5 years now so that's OK, I've read your story very interesting, you've had the worst time ever and very lucky to have got through it .I have alot of symptoms very similar to yourself alltough most of mine are mild in comparison you are a warrior 👍😊. Thanks again for replying.

[LloydE in reply to Danimccrea]

No need to apologize about the time of the reply. The stages you are at is probably the worst as you don't know or fully understand what's happening. Good thing is, it's being looked into so hopefully your Doc will find the cause soon. Slightly confused (might be brain fog) but you say your Doc can't find the cause but 50% of people with Lupus can get renal problems. When my Kidneys went south my Lupus was fine, hadn't had a flare for about 3 years. The fact that you have Lupus is probably the cause.