My son aged 18 was diagnosed 2 weeks ago with SLE and lupus nephritis and pneumonitis. He was classed at a 4 for his kidneys and has been started on IV rituximab, had 3 pulses of IV methylpred and is on oral pred, mycopehalate, Adcal and ranitidine. His BP is roughly 90/45 average at the moment. His haemoglobing has risen to the dizzy heights of 77 from 70 on discharge! He had no symptoms at all and trained 6 days a week with cycling team. His first symtpoms were joint swelling, vomitting and fatigue less than 4 weeks ago. And protein/blood in urine.
Thankfully renal biopsy shows no scarring and he is starting to perk up.
Can people with nephritis tell me a little bit about their own experiences post-diagnosis? What kind of flare ups do you get, how do you recognise them, are they as bad as the first time, how often do you get them etc etc. If you were an athlete of any sort, can you resume your activities between flare ups?
Fin is unusual in that a) he was 17 when first became unwell (admitted on his 18th birthday) and b)he is a boy
I would really appreciate your own personal experiences and I understand that this is a very individual disease but i am struggling to find anyone like Fin (age, gender and severity) so am seeking your experiences.