blood in urine

had blood in urine no protien having back pain went to doctors not my normal doctor as he on holidayhe said nothing to worry about have lupus nephritis grade 3 last 3 urine sample were clear so i thought medication is started to settle things down im worred thats its attacking my kidney again didnt know wheather to contact my specialist anyone else had these problems ?

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  • I've also had blood in my urine without protein. My rheumie wants me to see a urologist for further testing. I hope everything turns out fine for you. I'd contact your specialist just to be on the safe side.

  • Hi all,

    I also have blood in my urine....my gp keeps treating me as if i have cystitis and gives me antobiotics, even though the tests reveal no bacteria is present.

    I spoke to my consultant yesterday, to highlight the fact and that i was testing my urine myself as it never gets tested at clinic even though i have previously had protein in my urine, they tested the sample i had brought and it did have blood and protein present!!! they are going to send the sample for further tests.

    However, i have also been getting pains around my kidney area, my consultant said you do not usually get pain with lupus nepritis and yet i get this pain when i have inflammation in my joints and i am obviously having a flair.....my consultant is increasing my steroids to hopefully address this as he thinks it could be inflamation due to the lupus, but they dont really know.

    It amazes me that the doctors unless it is listed as a recognised symptom ....just ignore it instead of listening to the patient....I know the pain in my kidney area is down to a flair in my lupus...so why won't the bloody doctors listen!

    I think LUPUS UK should send an invite to all the rheumatology teams nationally and invite them to read the blogs and questions from people suffering this bloody awful disease and maybe they might learn something from the 'horses mouth' so to speak, rather than relying on outdated research papers..completed by people who dont have lupus

    Sorry about the rant, but everything to do with this condition is a fight.....you have to fight for treatment, benefits, work related issues, discrimination from collegues and the public in general who are uneducated about the condition, and thats without having to deal with the condition itself!

    Jan

  • Jan I totally agree with you, something needs to be done.

    Living with this condition is a constant battle. We know our bodies and the doctors should listen when we know something is wrong!

    Yols x

  • Well said....you've just put into words how i'm feeling!

    Thanks

  • hi Jan again

    forgot to mention you can get the urine testing sticks on amazon that test for protein and blood in your urine for about £3-£4 ........

    I resorted to these as i have never had my urine tested at my rheummy clinic!!even though it is one of the most common complications of the condition.

    at least if you know it is showing raised levels you can make your rheummy aware of this......doing their job i know, but ii is amazing how the basics appear to be ignored

    Rant over Sorry

    Jan

  • My 14 yr old son also has bloody in urine it's due to his kidneys.. But GOSH and Oxford are saying the meds are working! And his progess is doing well...

  • I've had microscopic blood in my urine at every dipstick test taken for the past 10+ years. On some occasions there is also protein and I am then given antibiotics to treat for infection. Sometimes there is bacteria growth, sometimes not.

    I have been investigated twice (cystoscopies) including a biopsy but everything comes back negative.

    The last doctors says "it's probably due to the SLE" but no formal diagnosis made other than chronic microscopic haematuria.

    However my sister has bladder cancer and interstitial cystitis so naturally it's of great concern, but supposedly there is nothing to worry about. :-/

  • Very interesting! For over a year now I have been suffering with kidney pain and blood in my urine, with occasional protein. Have been treated on more than four occasions with antibiotics but found that they did not work. I was investigated by urologist for stones, none found. Had camera in bladder, all was fine. Was told I had renal colic. Just recently had kidney biopsy and awaiting results. The nephrologist seems to think the pain is due to something else, as the kidney appeared ok. But the pain is definately coming from the kidney.

    It is very frustrating, as I am sure this is lupus causing the pain and blood. I tend to feel really unwell with this and the pain is getting more and more frequent.

    What are we supposed to do? It is very worrying!!

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