21,949 members17,391 posts


I am seeing a lot of post on kidneys. I found my kidneys both were scarred back in April 2014 from a sono. I had protein and blood in urine. Or is the protein in my blood. Anyway, I had low end lupus diagnosed with a low ANA. I spent quite a bit of money to get another blood test in August 2014, blood work showed nothing. Everything normal according to rheumy and no lupus according to rheumy. My question is, do I have to worry about my kidneys getting further damage? Should I follow up with a different doctor? I think my kidney dr is a jerk. He didnt even tell me to come back in 3 or 6 months with scarred kidneys already documented. I get back pain here and there which I generally ignore and attribute to tissue tightness in my back. Should I find a new kidney dr. And at the least check my kidneys to see if further damaged in 6 months or a year from original sono? What are the normal check up routines for lupus patients? Thanks for any advice. Don't want renal failure pop up on me one day.

16 Replies

Hey have you had a biopsy on your kidneys? I was having a lot of trouble with back pain in my kidneys area, along with high amount of blood and protine showing up in urin tests for almost 2 years, they decided to do a biospy after numbers of times being ammited into hospital due to the pain and it turnt out I have connective tissue diease in my kidneys and pretty much "they leak" the membranes are to thin the lining so they leak I suppose and that's how there is blood and protine showing up in my urin, I have SLE and I go to see a lupus specialist at the hospital once every month unless I'm having a bad flare up he will see me every two weeks to keep a close eye on me hope this helps? Feel free to ask anything


Thanks question, what do they do about connective tissue disease in your kidneys? Just curious to know what drs. Do about that to help you..


Hi Natura,

I too had blood and protein in my urine but was not told this until I went to see my GP who reminded me that I need to have my urine checked almost monthly until they where satisfied that there was no more damage. It is better for you as you where told and you know, so I would think you have to go and see another doctor so they can do the tests and check again so you know what is going on rather than just wait and be told bad news later. I had to ask my Rheumatologist why he did not tell me and all he said "it was not that serious so I had nothing to worry about", but said I should have my urine tested every 3 months!! I hope you get an understanding doctor!! Take care. You are not alone in this!


Pipido... Thanks for infor. It sounds like I should be having urine tests more often than 6 months ago. What kind of treatment do you get?

1 like

Natura..... Am glad to share. For now I just take medication for Lupus which is Plaquenil, Prednisolone, Duloxetine, etc. My Rheumy said he will keep monitoring if it gets worse then they will suggest more medication. Hope you get tested and settle your mind!!


When my kidneys did go into crisis mode they started me on bicarb of soda/baking soda.

This is very alkaline and something the kidneys seem to need when they are failing. I was also told to drink lots of water.

I didnt get pain relating specifically to kidneys prior to my crisis but there were lots of other signs. Crushing headaches and lots of bloating/water retention, nausea and sickness and felt dog tired constantly.

You may have the label of lupus or not but I am convinced that its the condition that should be treated not the label but too many medics only look for test results these days.

You should be having regular bloods to check creatinine levels. When the kidneys are not working creatinine levels build.

And like pipido says regular urine tests as well.

I was managed essentially by my gp until the crisis really hit


Thanks overnight. I did read something about baking soda once. Interesting. My husband found a good GP. I think I am going to see him. My ins is getting worse as of January, but I will try to see him. Thanks.


Just to reiterate previous comments 24hrs urine samples, creatine level checks, biopsy and close monitoring seem to be the usual procedure.

This was the case for me. In 1999 I had my first biopsy which indicated scarring and another biopsy in 2005. Unfortunately for me my kidney function drastically deteriorated in 2009 and by 2010 was diagnosed with end stage renal failure. Started dialysis in 2011 till present and on transplant waiting list. But I had a good 11 years before it got to the point of failure.

This will not be the case for all with kidney involvement but ensure it is closely monitored.

All the best x


Thanks charm.....this is what I am worried about. I should monitor because it could get worse. I am really annoyed with my kidney dr. He just wrote me off. Will start with urine tests and go from there. Thank you all so much for your support and care!


I have many symptoms of Lupus but not diagnosed I also have protein in my urine


Onamission....I don't think the blood work is all that shows lupus. I still have symptoms even though I show negative in blood work. Take care


I've had the symptoms for years my blood test came back negative I have even been to GP's appointment covered in purple bruises I get them more if I'm in the sun and the GP has even seen the rash on my face I have it now it's burning I could play Rudolph with my red nose. The GP's are guided by the specialist and the guy I saw blamed all my symptoms on the steroids even though the symptoms started before I took steroids

Reply's weird how drs don't talk to other drs about symptoms and such....very frustrating...hope u feel better


It's a case of GP being guided by the specialist one day I will find out what is causing these symptoms



I have lupus and have on a few occasions been admitted to hospital where I have been put on a fluid chart and 24 hour urine collection with lots of blood tests and the urine was tested several times as I filled the bottles up, I had my own loo on the ward with a row of bottles along the wall, very elegant! The result of this was a change in my medication and I had to drink more water each day. The process was then repeated a few days later and I was allowed home I now just take a sample to my GP frequently and have regular blood tests as well as my lupus monitoring bloods done.

I would say avoid getting dehydrated and if your urine looks or smells suspicious see your GP

Take care have a good Christmas and a happy and HEALTHY new year

Madmagz x


Madmagz...I am going to call GP tomorrow and get a urinalysis at the least. I also don't depend on any dr to read my results. I took some biology in college and it s not that hard to look online and figure out results ourselves. I was worried all weekend going to the bathroom often during the night and it does smell funny sometimes. My health ins is pretty bad, so I will do once and see how bad the co pay is. Merry Christmas and healthy and happy new year to you too!


You may also like...