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    Default worried...

    Last Monday I developed some strange symtoms (for me anyway)... thought I had possibly devolped a UTI. Called my GP, got in to see her Thursday. Symptoms were much worse... frequent urination (every 10-15 minutes), inability to empty bladder, extreme pain and pressure after voiding (to the point of crying).

    Did a urine sample... LOTS of blood in the urine. Gave me Cipro to take for 5 days, doc said UTI. Sent the urine to the lab to check for bacteria.

    Symptoms have worsened, and now there is visible blood on the tissue after urination. Got a call at 9:00pm last night (Yes... on a Sunday night) from the doc. Lab tests say no bacteria... so it isn't an infection. Going to set me up with a Urologist, and possibly a Nephrologist. Doc says this is out of her league. See my Rhuemy Tuesday and he should have all the info faxed from GP by then.

    I was hoping for infection, strange as that sounds. Worried that the Cytoxan is attacking the bladder...

    Thanks for letting me vent. Just a little freaked out right now and wondering 'what now?'

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    Misskay, anything but trace blood in the urine of a Weggie should always be assumed to be due to Wegs. This does not sound good. Did they do blood work to check your kidney function?

    Since you're on ctx, it's most likely that it's hemorrhagic cystitis (bladder hemorrhage) caused by the ctx. This is a medical emergency as you can be losing a lot of blood and not know it. You can't wait til Tuesday to see a doc. Go to the ER right now. They can call your GP to get the info and do more testing. I'm not sure what they do-- maybe a bladder ultrasound? HC is very well known with ctx so they will know what to do. Go now.

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    Agree with Sangye!
    You urgently need to see a Nephrologist to get your kidneys checked out. This can't wait and your best bet would probably be through the ER.
    Good Luck!
    Jack

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    Quote Originally Posted by misskay View Post
    Last Monday I developed some strange symtoms (for me anyway)... thought I had possibly devolped a UTI. Called my GP, got in to see her Thursday. Symptoms were much worse... frequent urination (every 10-15 minutes), inability to empty bladder, extreme pain and pressure after voiding (to the point of crying).

    Did a urine sample... LOTS of blood in the urine. Gave me Cipro to take for 5 days, doc said UTI. Sent the urine to the lab to check for bacteria.

    Symptoms have worsened, and now there is visible blood on the tissue after urination. Got a call at 9:00pm last night (Yes... on a Sunday night) from the doc. Lab tests say no bacteria... so it isn't an infection. Going to set me up with a Urologist, and possibly a Nephrologist. Doc says this is out of her league. See my Rhuemy Tuesday and he should have all the info faxed from GP by then.

    I was hoping for infection, strange as that sounds. Worried that the Cytoxan is attacking the bladder...

    Thanks for letting me vent. Just a little freaked out right now and wondering 'what now?'
    Have had similar problems now for months with recurrent bladder infections. Last one developed when on Cipro at prophylactic dosage and infection was resistant to Cipro. I only had painful spasms when an infection was present, but similar feelings also happen when Cytoxan irritates the bladder. Several times I thought I had an infection when lab didn't find anything. Sometimes I developed an infection a few days later. The urologist scoped out bladder and checked for damage to bladder from Cytoxan meds and that was an easy painless procedure. She told me my bladder looked in good shape for taking Cytoxan meds for several months. They told me some blood in urine was natural from taking Cytoxan but large amounts of blood suggest Wegener's is still active in kidneys but I think this would also show up in other blood work and urine tests they can run since they have told me my Wegener's has become less active from the treatment and kidney function has improved. I found getting bladder flushed out with large IV drips also helped get rid of symptoms and discomfort, especially when they add antibiotic.

    Suggest you get another urine test and see an urologist soon.
    They can also check the kidney functioning with blood and urine tests.

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    I agree with the rest, if you lose too much blood you will have other medical emergencies to contend with. Let us know how you are doing.

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    Please take care of yourself. I don't have anything really useful to add that hasn't already been said, but I'll be thinking about you.
    ~ Bob

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    Misskay, I agree with you that a UTI sounds good at this point. Let us know what the urologist says when you see him soon I hope. A cystoscopy should let you know if its the bladder.
    Jolanta

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    Well, headed out to the ER yesterday but didn't make it. We had 4" of snow on top of 1/4 inch of ice... ended up in a ditch. Not hurt, no damage to car... just a long cold wait for the tow truck.

    Saw the Urologist today... did a cystoscopy, said the Cytoxan has the lining of my bladder looking like hamburger meat *nice, huh?*. Tried to do a procedure where they use a cath to put DMSO (works like lidocane) in the bladder to ease the pain, but my bladder spasmed immediately and we couldn't keep the medicine in there. Hurt like crazy... I howled, I cried.

    Doc gave me Prosed to ease the spasms, Vesicare to reduce the urges, and a topical ointment to help ease spasms also... am off the Cytoxan for a week or so, and we may switch to IV insteadof oral. If I have no improvement in a few days, I go back and they will put me to sleep and numb the bladder that way. Not optimal, but an option.

    So I'm finally home after leaving the house at 8:45 this morning. Crawling into bed with my blankie, my cats, and a cup of herbal tea.

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    I am SO relieved that you had that procedure, as awful as it sounds. (And I'm also sorry you wound up in a ditch! I can't imagine sitting in the cold with a bladder problem.)

    I assume they used mesna during your ctx IV's? That's supposed to protect the bladder. No way to do that with oral ctx.... With severe bladder damage like that it just seems crazy to put more ctx in. I wonder if you can get switched to rituximab.

    I hope you feel better, MissKay.

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    I can't imagine sitting in the cold with a bladder problem.
    Should have seen the tow truck driver when he finally got there and discovered me in the ditch hiding behind the car with my pants around my ankles....

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