I am a 28yr old female who has was diagnosed with Lupus Nephritis (class 4) about a month ago. I wont lie it hasnt been an easy ride both physically or emotionally and it does feel like my whole life was turned upside down. Luckily my family have been amazing and very supportive and which has been a God send. I am currently on 50mg steroids and 200mg of Mmycophenolate mofetil as well as 8 other drugs to manage blood pressure, Cholesterol protect bones, anti blood clotting and other Lupus symptoms etc. They had to give me IV steroids in hospital initially for 3 days as the Lupus was so aggressive and the kidneys were badly affected. The doctors are seeing a slight drop in protein levels in the urine but the levels are still very high. There was a good drop in the first 2 weeks from 4000 to 1300 but thats stuck again and not moved for a week. The consultants are great and explained all in detail and they say they may have other medications they could try if they dont see further improvement but due to the nature of Lupus and kidney involvement it is a case of a waiting game for the remission to kick in.
I was wondering if anyone else has had any similar experiences that you can share, what worked for you, timescales and treatments that were helpful. Or any tips or words of warning/advice would be fantastic.
Thanks so much.