worried...

[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!

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.

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.