Hemorrhagic cystitis?

[Patty]

Has anyone had hemorrhagic cystitis? I had a UTI, it cleared but I had blood in the urine and continuing symptoms. I take oral cytoxan which can cause the cystitis. Saw my rheum this week and she said to cut the pill in half. I was up all night in the bathroom and am naseaus. My PC dr is trying to work me in today to see if it is a UTI or cystitis. Does anything help relieve the symptoms? I have been taking AZO but it only helps if I don't drink much water and I am supposed to be drinking as much as I can. This is really miserable.

[cat]

Hi Patty

Sorry you are suffering with your bladder. I see you have IC, I also have that dreaded disease.

I am on Elmiron 3 times a day since the mid 1990's. Vesicare once daily was added about 4 years ago during a bad flare. The combination of the two settled the flare and I am doing really well with the IC. The vesicare stopped me from having to go to the washroom every 10 or 15 mins. Now I only get up once at night and am able to get some sleep.

I have pin point hemmorrages in my bladder and it is not unusual to have some blood in the urine for some of us.

I am under the care of a good urologist and he follows me regularly even though I am under good control. You never know when that will change.

I hope this is useful for you.

All the best
Cat

[eye2dry]

Hi Patty.

I had posted back a month ago about my problems with this issue.

I started on methotrexate 1 year ago and last fall got a UTI, was treated with 2 different antibiotics.

Then in April had to go to urgent care one night for rapid onset of bright blood in urine, no real discomfort, no temp.
UA came back positive for strep...treated with Amoxicillin 500mg three times a day for 10 days.

Follow up with PCP...lab finds microscopic blood in urine but no bacteria.

had to see urologist....get a abdomen/pelvic CT and then a cystoscopy...all were normal. The urologist could not tell me why it happened.

Methotrexate has a possible side effect of cystitis but not one of my drs. would say this was the culprit.

I have since stopped my methotrexate...have not taken it for nearly 6 weeks.

see my rheumy june 14th.


did you have a bacterial infection present in your urine? white blood cells? do they want further tests to rule out interstitial cystitis, bladder cancer, stone,etc...?


eye2dry

[jazzlover]

I have IC also. I have been greatly helped by D-Mannose, which I take twice a day. NO troubles for the past 2 yrs. What a blessing!

[Patty]

Thank you everyone! I will check into the Elmiron and the D-Mannose. I was diagnosed with IC years ago and was taking enablex but I didn't seem to need it anymore. After several trials of stopping it with no change my dr agreed I didn't need it. Of course that was when I was having no problems. I have trouble with the nerves around the bladder spasming and get frequent UTIs too. I had a re-check this week and had blood but no bacteria. They didn't say anything about white cells. My rheum ordered it and went over it with me so I think she would have told me if there were white cells. She said cut the cytoxan dose in half and go off it in a week because the rituxan should kick in by then. I am so much worse since I saw her on Tuesday that I am wondering what to do. I called and left a message with my urologist and am waiting to hear back. Unfortunately it is a 2 hour drive to get there and we are almost to the weekend .... Really hoping she can give me something that will help. Sounds like the Elmiron would help with what I have going on now and the D-Mannose is for maintaining health and prevention. I will ask the dr about both. She is very open to using supplements unlike some drs.

Thanks again. I have a lot of health problems, but this is the one I hate the most. It is good to hear that there are some things we haven't tried yet. And maybe it is the cytoxan causing the trouble - it is hard to know - I have so many things going on with the IC, infection, cytoxan and low immunity.

[eye2dry]

My daughter had quite a few UTI's...sometimes infection was present...other times symptoms but the labs didn't back up a UTI diagnosis.

Finally after a cystoscopy she was diagnosed with interstitial cystitis.

I know she takes Elavil for it and was on Elmiron too.

She  says she can feel it always hanging around but she can live her life better with the meds.

eye2dry

[jazzlover]

D-Mannose keeps infections away for me. I can't take cranberry as it burns like fire. D-Mannose does the same basic thing without the acid.

[Patty]

Thank you, Jazzlover. I will give it a try. I can't drink cranberry juice either.