Lupus nephritis and infections/fever

[katelyndsauls]

My brother recently got diagnosed w Lupus Nephritis class 5. Before his diagnosis, he had no lupus symptoms. He is 27 now. His initial presentation was fluid overload/pleural effusion that was misdiagnosed as pneumonia... anyway, after several hospitalizations, he got the diagnosis of LN- he was started on MMF, prednisone, ACEi, lasix, PPI, beta blocker.... was also put on bactrim 3/ week (has anyone else been on this to prevent PCP pnuemonia???- has since stopped due to steroid dose decreasing)

6 mo after diagnosis and has now decreased to 10mg pred daily but increased to 1500MMF BID. after this change, he seems to be getting sick every 2-3 weeks. He got shingles (still bothering him after months of rash being gone) and is now having random joint pains/fevers.

I am wondering if anyone has a similar story? he never had common lupus symptoms before the nephritis.. maybe the nephritis was just his first symptom? reaction to MMF? Fevers come with shaking chills, as high as 103 at times....

His renal function seems to be responding to the meds, the protein in the urine is coming down slowly (started at 8g/day...now 2-3)..so I'm thinking the meds are working but now he is having even more symptoms? I don't know..just trying to understanding and I find real examples helpful.

Thank you

- Worried big sister trying to help.

[PattyM_NKF Moderator]

Hello Kate - I am so sorry you and your brother and family are going through this -- it sounds very tough and he's lucky to have you in his court. You may have already done this, but there is also a Lupus group on this site (LUPUS UK). You may be able to get a feel for the range of sypmtoms from folks there as well. It's a tricky disease, as you well know already. There is some general information here too: kidney.org/atoz/content/lupus. I hope you find some answers soon.

[katelyndsauls in reply to PattyM_NKF]

Thank you so much!

[Jenjudyst]

Hi Kate, sorry to hear about your brother My Mother had lupus and was given a malaria drug along with predisone, The drug was called placqunel not sure of the spelling. Maybe you can check with your Dr, to see if it is something he could take, not sure of all his problems, just a thought. Hope he gets better real soon.

[katelyndsauls in reply to Jenjudyst]

Thank you so much!

[GonetotheBeach]

My daughter was prescribed plaquenil ( for mixed connective tissue disease - somewhat related to lupus) and it along with a strict autoimmune diet has managed to get it under control. This after being hospitalized for pericarditis/ liver problems and on steroids. She still has flare-ups but is able to work. Wishing your brother best of luck.

[katelyndsauls]

thank you so much!