worried...

[misskay]

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?'

[Sangye]

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.

[Jack]

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!

[drz]

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.

[elephant]

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.

[Psyborg]

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.

[jola57]

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.

[misskay]

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.

[Sangye]

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. :hug2:

[misskay]

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.... :blushing:

[Sangye]

ROTFL Awwww...

[elephant]

Misskay so glad you are ok. Sorry for hell you went through today. I did LOL and my son...looked at me??? I just imagined it yellow snow!

[LisaMarie]

Misskay


sorry for the run in the ditch and the painful proceedure...my doc says my other option will be back on IV cytoxin ...hope it works for you....rest well today...it'll take a fe3w for u to feel up to do anything

[drz]

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.

Glad you had the procedure but sorry results were not better for you. At least now they can begin to take steps to relieve the pain and heal the problem. My urologist said she often finds what you describe in patients on Cytoxan so I was very happy when she said my bladder looked good. You can still have spasms from the irritation even though no physical damage is noted in bladder. Good luck with your treatment. Thanks for posting the results.

Glad you mad it home safely. The pix of people stranded from that storm in Indiana and Canada were scary. Purring cats should also help relieve discomfort of the body.

[misskay]

Still no relief... even with the new 'anti spasm' meds.
Urologist explained it to me this way: Cytoxan makes the lining of the bladder slough off similar to an acid... and the Prednisone keeps it from healing itself. You can have no symptoms, until it gets to a certain point. Hydration is key folks... water, water, water. Don't let this junk lay in your bladder. I drink at least 2 quarts of water a day, and apparently it still wasn't enough, at least in my case :/ I've been on the Cytoxan for 5 months now... and have now skipped it for 2 days. Hopefully will start to help soon...

[Sangye]

I'm sorry you're still suffering like that! :sad:

Two quarts a day is about 2 liters-- should be plenty of water to keep the bladder flushed.

My first rheumy told me that with ctx you need to:
1) Drink a lot of the water close to when you take the ctx AND
2) Pee every time you have the feeling of urine in your bladder (ie, don't wait for a full bladder sensation)

I couldn't tolerate taking the full day's dose at one time (stomach pain), so I split it into two doses--morning and late afternoon. If you do this, you need to make sure you drink and pee out all the water before bed, or the ctx will sit in your bladder overnight.

[misskay]

My Rhumey just called to check on me and see how I am feeling. FINALLY started to get some relief with the new meds from the Urologist yesterday... this has been a long, painful 2 weeks...

Been off the Cytoxan for a week now. Rhumey said he is afraid that any more Cytoxan, even in IV form with bladder protection meds could possibly lead to permanent damage to the bladder or cause it to hemmorage. He's talking with my insurance company right now to try and get me approved for Rutixan (sp?) which we would infuse once every 6 months. Also, even though we've managed to get the pred down to 7.5 mg, he wants to take it back up to 15mg for now... just to be safe. He's afraid that since we haven't reached 'remission' yet and can't use the Cytoxan that the inflammation will return. *sigh*
Getting pretty tired of being on Mr Toads' Wild Ride.

[Jack]

Sounds like the right thing to do and it may help you feel better in time for Christmas. :hug2:

I think we should all take notice of this wake up call to take action as soon as things start going wrong. misskay did take action and things were slowly moving in the right direction, but sometimes we have to kick the system to get it to react fast enough. When you have Wegener's any new symptoms may turn out to be serious.

[me2]

Misskay I'm so sorry to hear about the ordeals you have been through. Having had the bladder pain myself I can relate. I developed a bleeding bladder during my second year of oral cytoxan over twenty years ago. I quit the cytoxan and the bleeding stopped. I was lucky that I also had remission.

Many years went by and I flared again and tried to take oral cytoxan. It caused terrible bladder pain. Fast forward through several years of other treatments and I am now on IV cytoxan with Mesna. I was scared to death the first infusion I did that the Mesna would not work and I would suffer the bladder pain. Well that was months ago and I can say that Mesna with IV works great for me. No pain at all.

I hope you get a breather now and a new plan. The Mesna works. I found some studies on other substances that work for Cytoxan protection that I posted on another thread. They are natural substances that I take during the rest of the time just to help make sure my bladder is protected.

[Sangye]

Oh gosh, Misskay-- 2 weeks of that sounds just awful. I think a switch to rtx is great idea. No need to take any chances when there's an equally effective drug available. Good idea to increase the pred again, too. You need something to "cover" you until you get rtx and it starts to work.

[jola57]

Oh dear, it is enough to bring tears to my eyes just thinking of your pain. I have had them often in the past but never this bad. I am soooo glad it is getting better. My heart is with you.

[misskay]

Feeling MUCH better today.... The best way to describe the pain is *for the ladies* late stage labor. Unbearable urge to bear down, and excruciating pain, ...... Soooooo glad it's finally going away. Feeling pretty wired today due to the increase in Pred, and have horrible dry mouth from the antispasmodic meds... but otherwise, so far so good other than the lungs feeling a bit funky. Lots of nasal congestion and crusting, and a wet, barky cough :(

[ScreaminMeanie]

So glad to hear you're finally getting some relief! What a horrible ordeal.

[me2]

So glad to hear you are feeling better Misskay. Be sure and keep up on nasal irrigation for the crusting. It feels so much better when things are clean. I am having to do more than usual irrigating myself right now. For the dry mouth my sister in law 'the nurse' fixed me up with something recently that is practically a miracle for dry mouth called Biotene Drymouth Mouthwash. The stuff works great. Drinking water doesn't help but this Biotene gives tremendous relief. I think she said it has some kind of oil in it. I haven't had a chance to do my usual study of a new tool yet.
Keep on getting better.

[jola57]

Glad the meds are doing their thing Misskay