BCG Cystitis a.k.a Interstitial Cystitis

14 years 8 months ago #26656 by sara.anne
Replied by sara.anne on topic BCG Cystitis a.k.a Interstitial Cystitis
I am not a uro, but my understanding is that BCG cystitis and interstitial cystitis are two totally different conditions. My first, tentative diagnosis (before the bladder cancer was biopsied) was interstitial cystitis and I did a lot of reading about it. It is a disease unto its own, and they do not know the cause.

In the midst of my last BCG series, I had burning, urgency, discomfort....and my urologist said that I had BCG-cystitis (a very mild case). It was not treated with antibiotics (I think it is due to irritation of the bladder wall from the BCG and not an infectious agent).
We delayed the next treatment until it healed....he did say that adding more BCG when the irritation was still there could cause a cystitis that could last a year!
It is possible that you have IC independently (I hope not). There is a LOT in the web about this condition.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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14 years 8 months ago #26654 by Nix
I am wondering if anyone on the site has had BCG Cystitis. I am going through that now.
I am now on Cipro (last 25 days and will continue for another month), and my Uro just added a 5 day pack of steroids.I just started my third day of steroids. I also take Amitripyline at bedtime. Uro moved me up to 50mg.
I am now watching my diet - very closely, and of course drinking plenty of water during the day.
I have frequency 24/7. I am up 6-8 times during the night. I had my last BCG 5/28 but did not start on the Cipro for two weeks after that. I know it takes a long time to get over this, but should there be improvement along the way?
From what I have read, I probably have a moderate rated Cystitis. I had not heard of this before I had it, or maybe I heard about it and did not think it was this extensive.
Any information from anyone who has been through this would really help. I have a lot more questions.

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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