Needing a miracle now!

Looking like my SLE is under control and going into remission for a 2nd time, no water tablets for 3.5 weeks all looking well and now I'm back on them at 2 per day sometimes 3 to control the water oedema. Kidney function is in decline still but just had another dose of Rituximab to help fight the lupus too. Spoke to the dialysis team regarding starting dialysis if I need to and felt strange doing it. I walked into the room and was the youngest ( I'm only 43yr man) compared to the rest of the group. My consultant says he's hoping it won't come to this but best be prepared incase the inevitable happens. Anyone else been through this or know someone who has been through this? I'm finding it all quite daunting to be honest.

[Freckle1000]

I'm sorry - I don't know what's it's like to be directly confronted by dyalyisis, but I do know how eerie and horrific it is to be told that I'd loose my Kidneys. To say it's confronting is an understatement.

Somehow I managed to scrape through in 2015 when things were looking pretty bleak for mine - and I really hope you do the same.

It's an extremely traumatic position to be in - but getting the SLE under control was the starting point and most important point for them healing for me - along with the right BP meds etc. etc.

I know there are people at this site who have gone through dyalyisis and have had transplants - and I'm hoping they reply.

( There's also a chronic kidney disease CKD site at healthunlocked ) that might be helpful if people here go a bit shy.

[Hidden in reply to Freckle1000]

Thanks

[TM1970]

I’m in same position except your consultant seems more on the ball, what level are your functions showing? Mine is gfr 43, but no one seems concerned

[Hidden in reply to TM1970]

Sitting about 15-20% sadly

[Jmiller623 in reply to Hidden]

This is pretty low. Has anyone mentioned the words kidney transplant? I do not want to scare you but this would be the next step if you become dialysis dependent. To find a match takes some time. I’d ask the search start now even if you don’t wind up needing one.

[GERY]

I take rampiril & was also taking water tablets my Lupus was in continuous flair with my hair falling out & itching all the time, it had never been this bad before, then I read the information leaflet for the water tablets which stated do not take if you have Lupus. I stopped taking the water tablets & the constant itching & skin rashes stopped. I haven't told my GP yet. The relief is wonderful - maybe it is just me

[Hidden]

As I said my disease is hopefully under control now, it's the kidneys that need the help