Started on BCG in July 2008, and all was well up until this last maintenance series. I've now had a total of 18 BCG instillations, including the initial 6-week ones. Although I'd read of a lot of you with severe BCG side-effects, I had almost no symptoms with the initial 6-weeks or subsequent 3-week maintenance doses, and was being my usual optimistic self, and thinking "not me." I knew the effects of BCG are cumulative, but I guess I thought that meant also that you would have cumulative or gradually escalating symptoms. My happy bubble burst last Thursday (Nov. 5), when I came down not only with a fever on the day of the instillation (which I'd had once or twice before), but also with very severe pain which has persisted off and on ever since. No bleeding, just very sharp cramping-like pain very low down (feels like labor pains in the urethra). Finally called the urologist Saturday morning, and he's given me Detrol-LA (for the cramping) and another for irritation/pain (forget the name--it's the one I think derived from chrysanthemums and turns your urine bright orange-yellow).
The urologist suggested stopping the BCG altogether when I spoke with him on Saturday, but I said I might like to try the reduced dosage option next time (which won't be for another 6 months). Now I'm not so sure about that, given that it's taking so long for the symptoms to let up. I'm definitely a little better each day, and can sleep through most of the night, after being in such pain the first two nights I kept getting up and pacing around.
Any advice? Given that I had a very low grade non-invasive tumor the first time, and that the recurrence was the same type and not for two years, I don't think I'm in a super high risk group. I'm now 16 months out from the time of the recurrence, and am still all clear--but I have no way of knowing if that's because of the BCG or if it would have been like that without it.
Nix, Sara Jane and others whose BCG travails I've read about -- now I know all too well what you've been through, and I know my symptoms haven't been as bad as some of you!
One other question: How can you tell the difference between an infection and having a more "mechanical" irritated bladder reaction to BCG? I only had a fever (101.6) on the first day and not since then, so I'm assuming this isn't an infection.
Ann
