Hi everyone,
I have another short online survey for people with a diagnosis of lupus nephritis (lupus affecting the kidneys). The link is working now.
The results of the anonymous survey will be used to shape future research. surveymonkey.co.uk/r/JLXCFFC
😳 Really ?
I've had lupus nephritis most of my life - and every time I've gone off immunosupressants I've had damaging renal flares.
Recently there's been a fight between specialist camps - Rheumatologists wanting us / me to go off as many medications as possible due to long term drug side effects - and nephrology / lupus specialists saying - do not listen to them and stay the the hell on them for god's sake.
When I had to choose between camps it was a no brainer. I want to keep my kidneys and orher internal organs stay alive.
Rheumatologists are great when it comes to concentrating on the external manifestations of lupus, arthritis, pain rash etc. and following off from this career focus - quality of life etc. - but not so savy when dealing with lupus patients where the illness attacks the internal organs without the external symptoms.
I'm sorry Paul - but I think the potential research that could lead from these questions are unethical - and I've told them so. As a double unethical whammy people with renal involvement often have accompanied SLE neuropsychiatric involvement. 😳
Hi Freckle1000 ,
Thank you so much for completing the survey and sharing your thoughts. The researchers are very keen to collect the views of patients about this because it will ultimately help to decide whether a trial like this would happen or not.
The hypothesis is based on some evidence indicating that a biopsy-proven remission of lupus nephritis may indicate safe withdrawal from treatment. The trial would see whether additional evidence supports this, but if people wouldn't feel comfortable participating in a trial like this then it will be studied in other ways.
Panicking about blood in urine - lupus nephritis
