Blood in urine

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*Sorry for graphic details*

My husband has had Wegeners for 15 years now, he was diagnosed when he was 17 years old. He had his first relapse in 2013 and they started him on rituxian and methotrexate.

He has weaned himself off both and has been doing well, despite the full hip replacement 2014 due to all the steroids... fast forward to just the other day, he was at work and noticed blood coming from his penis. It was in his stream and when he wiped it was on the toilet paper. I told him to go to the ER and I met him there. I kind knew they weren't going to know what to do bc of his disease...they discharged us and told us to watch it and follow up with his specialist, which we are but can't get in till November, even after explaining the situation...I'm nervous and scared at what this could be, is it the wegeners or worse is it cancer

Has anyone had this experience? 

Nov is such a long wait to see his rheumatologist and then we will most likely have to see the urologist, make another appointment and wait!!

Any insight on this would be helpful!

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11 Replies

  • Posted


    Its sounds like he may have relapsed again, is he taking steroids ?

    I have wengers but it affects my lungs......and i relapsed last year but now under control

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    • Posted

      Thanks for your input, wegeners usually attacks my husbands respiratory system as well but we also feel it is a relapse.

      He is not taking anything at the moment, he really hates that this disease is a doubled edged sword and the steroids are distroying his joints.

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    • Posted

      Is he taking anything for his joints, as i"m prescribed, Vit D, Calcium and Fosavance. I have a Bone density test every year to ensure that steroids are nit affecting my bones and joints.

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    • Posted

      Also GPA can affect any organ in the body including the Kidneys.

      Did ER do any blood tests such as ESR, CRP or ANCA, if not then I would go to your local Dr and request them I wouldn't wait until November. If he has relapsed then getting the meds down is important.

      Also GPA has a high rate of relapse, I have already relapsed once so this time I will be reducing my dosage very slowly.


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    • Posted

      He already has A vascular narcosis. It's in his other hip but not progressing as fast as the other one did. 

      They didn't give him any RX for the bones. He is just taking  vitamins everyday.

      ER said they don't do those types of test and that he would need to see his specialist for that. 

      But he does have an appointment with his GP on Thursday, maybe they can do labs for that there.

      I think the sooner we catch this the better as well! Hopefully my husband will stop being so stubborn! wink

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    • Posted


      I'm assuming that your local GP is aware of his condition so should be able to do the necessary blood tests before you go and see the rheumatologist.....

      I think Multi vits will cover Vit D, but you need to ensure that there is enough calcium in the multi vit to cover....also i would ask if you can have fosavance as my bone density has not changed over the past 4 years and i swear by these tablets to help me.

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  • Posted

    Sorry to hear about your husband.  Blood in the urine is a sign of kidney involvement.  You need to get him in to see someone who is familiar with GPA.  You should check out the website for Cleveland Clinic.  They have a video that explains how they test for blood in the urine because it can be the first sign of relapse.  Don't wait.  I would even think about seeing a Nephrologist since many of them are familiar with GPA.  Relapse doesn't always involve the same organs as previous active disease. Good luck and I hope you can find someone to help him quickly.

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