Anyone else who has lupus nephritis have constant micro blood in urine even after a year of treatment? protein reduced but not blood

[poodlegal]

[Paula1968]

Hi I have this and have been at stage 3B for 6 years now. My doctors cannot commit to how long it will take for me to deteriate or even if I will. Its a waitng game sadly.

[charmaineholmes]

ihave stage 3 lupus nephritis and have blood in my urine which has not reduced but protein did after having chemo and now on mycophanalate my doc said it could be from the permement damage to my kidney .

[poodlegal]

thank you for your answers ladies xxxx

[natal1a]

Oooo hello. I don't know the answer to your question but could I ask a question back? I've been fobbed off by doctors who say there is nothing wrong with me, despite having two positive ana tests, joint pain, muscle pain and a rash across my cheeks! This week, I started getting really bad back pain in my side and blood in my urine. So off I went to the doctor and he did a test which showed blood and protein are present and also there were bits in it (sorry), that he said may be antibodies. I didn't actually make a link with lupus until reading your post? Could this be to do with lupus and if so, maybe a step closer to a diagnosis?

[LloydE]

i was daignosed with Lupus Nephritis in 1994, and i am sure my blood test still show trace amounts of blood in my urine. At a recent appointment my Dr told me that Kidneys have a life shelf of around 120 years. i was a 1 day away from needing a Kidney transplant, and two days from dying (but i am not sure what stage that would be). As i smoke and do lots of things i shouldn't my Kidneys are that of a 70 year old (almost twice my age) As long as you look after yourself and your kidneys well (unlike myself) i would thought you should be ok. I like to think it was a good 5-6 years of a no added salt diet that helped my Kidneys recover a bit. However my Dr's did say my body responds well to medicine and i am in far better health then they thought i would have been back in 1994.

[poodlegal]

hi natal1a,yes blood and protein in my urine was lupus nephritis,lupus attacks and inflames them basicly,even though blood test showed kidney function was okish,but also blood and protein loss can mean other things not related to lupus,the antibodies and pain suggest a infection as nephritis usually doesnt cause pain,but even if it is a simple infection your doctor still needs to act as kidneys are sooooo important as ive learnt,go back and ask tell them you want to know why you have this and what tretment are they going to give you,never give up,ask for 2nd and 3rd opinions i was fobbed off for 12 years with lupus symtoms and low white blood counts,until they seen the blood and protein nothing was done,good look,take care and keep us posted xxxxx

[poodlegal]

thanx lloydE,dnt understand shelf life of 120 years? is that without lupus nephritis,after all what ive learnt over my 32 years i dnt belive in if you dont do this and that you wont get this and that,i know people who have never smoked or drank and got cancer,and people that smoke 20 a day and are the heathiest person i know! i belive with a disease like ours its out of our control even the meds we take can cause other health problems!! bloody awful but what can we do,take care xxxx

[LloydE in reply to poodlegal]

No problem poodlegal. Everyone's Kidneys can last that long, My Dr said something like there is enough fuel (energy) in Kidneys for them work for 120 years. (When each cell in our body dies its replaced by another, kidneys have the most replacement cells, compared to other organs) People who die at 90, 100 won't die of kidney failure unless there something is wrong with them, you could probably transplant those kidneys to someone else for 10-20 years.

Do agree with you we have no control over this, i generally tend to do things and forget i have Lupus, even if i am told not too lol.

[poodlegal]

dnt blame you, as my teenage daughter and her mates are always saying YOLO!! you only live once!!! you live how you want to and enjoy your self LloydE xxxx

[LloydE in reply to poodlegal]

I also think a lot of it is psychological. i was at my most depressed when i worried about my Lupus. when i realised that worrying or not, wont change the fact that i have Lupus, i noticed i got a lot less depressed.

My emotional state does not change the fact that i have an incurrable blood disorder, that probably will end up being the reason for my death! worrying about that only made things worse, whatever happens in life happens. to an extent we are all incapable of changing various things in life, so dont worry be happy (as Bobby McFerrinn said)

[poodlegal]

AWW,love that song!! x