So, its been awhile posting on here. Have had a lot of stuff I have had to learn to deal with. Seems I have about
1% function of my kidneys left thanks to lupus. I am on dialysis, fortunatly get to do it at home but I am also doing dialysis 15-18 hours EVERY day.
Well recently I have started having brain issues. Can't speak clearly, words not coming out in correct orders, yada yada yada. Turns out I have Lesions on my brain. Treatment is dexamethasone...One of the steriods that actually deals with inflammation in the brain. Well guess what, it also makes me want to end my life. So now we have abruplty come off them and I meet with my doc to talk about what treatment to use for the lesions. I am currently on Imuran along with a bunch of other kidney meds I am allergic to cellcept, can't take mtx because of kidneys, and they said "heLL" no on cytoxan. Benlysta is out cause of the lesions. Looks like rituxan possibly?
So my story, I started having lupus symtpoms at 19. I was like Oh well, its lupus...how bad can it get. PLEASE NEVER think that. I did take my medications daily for 3 years (after a good scare) and it still didnt work. Know if you are in bad shape, sometimes you are doing EVERTHING you can but your body has other plans. Don't lose hope. Keep fighting. I promise, the good days are worth it!!!
dialysis from lupus nephritis