Blood in urine following sexual activity

16 years 9 months ago #6830 by ddoyle
Replied by ddoyle on topic Blood in urine following sexual activity
Wendy,

Thank you for the helpful information. My Dr. has already mentioned INH therapy in case the anti-inflammatory drug (Celebrex) fails to alleviate the bullous edema around the bladder neck. I have been taking the Celebrex since Thursday evening and the pain and bleeding appear to have subsided quite a bit but there is still a bit of pain when I urinate. I have an appointment on the 10th of August, by which time things will have cleared up sufficiently for a clear cysto to see about any remaining CIS.

I have to admit, much of the info is beyond my comprehension -- and some is frightening (fatal consequences of BCG sepsis)

David

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16 years 9 months ago #6808 by wendy
Replied by wendy on topic Blood in urine following sexual activity

Dear David,

I'm sorry to read about your problems and hope the bleeding and pain is better now, and that the antibiotics will fix things.

Dr. Lamm, an expert on BCG for 30+years, says that when there is a suspicion of BCG in the bloodstream causing infection, the anti-TB med isoniazid should be used as a prophylactic because it's too dangerous to wait. I friend of mine had this infection and was extremely ill, in the hospital with high fever and chills...in other words I think if you had the infection you would have known it by now.

I'm afraid you might be one of those who cannot tolerate BCG. Another option is low dose BCG+Interferon. It's supposedly less toxic to the bladder.

Experts agree that when irritative symptoms are present BCG should be delayed.

From Lamm's protocol on webcafe:
Treatment of BCG Side Effects and Complications

By lowering the dose of BCG to 1/3, 1/10/, 1/30, or 1/100th as needed to avoid increased irritative or systemic symptoms, very few patients have any difficulty with BCG immunotherapy. If irritative symptoms persist beyond three days, fail to respond to symptomatic treatment, or are severe isoniazid 300mg a day can be given. If patients respond promptly, I generally stop treatment after only one or two weeks. In patients who have true BCG infection requiring antituberculous antibiotics, for example symptomatic prostatitis, epididymitis, or hepatitis, isoniazid plus rifampin 600mg daily should be given for 3-6 months. With serious infections triple antibiotic therapy may be needed, and ethambutol 1200mg daily or a fluoroquinolone may be added. BCG is relatively resistant to cycloserine and pyrazinamide.

BCG sepsis can be fatal, and prompt and effective treatment is necessary. Since cultures are often negative, treatment must be given empirically. Patients require coverage for gram negative sepsis as well until blood cultures are negative. With sepsis the current treatment of choice is no longer cycloserine, but isoniazid, rifampin, and prednisone 40mg daily. Caution must be taken to taper the prednisone slowly because hypotension may return when prednisone is stopped. Occasionally higher doses of prednisone are required. Though a major component of this reaction is hypersensitivity, prednisone alone without isoniazid and rifampin should not be given. In our animal model, prednisone alone increased mortality, but prednisone plus antibiotics markedly improved survival when compared with antibiotics alone. "

blcwebcafe.org/drlammsprotocol.asp

And for more on BCG and the BCG+IFN option:
blcwebcafe.org/bcg.asp
blcwebcafe.org/interferon.asp

All the best,
Wendy

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16 years 9 months ago #6804 by wsilberstein
Replied by wsilberstein on topic Blood in urine following sexual activity
Hey David,
BCG is a bacterium which is closely related to TB. It is used as an immunization against TB in many countries, but not in the USA. Its use for other medical treatments to some extent depends on its stimulation of the immune system when the body reacts to it. The term tuberculous cystitis suggests that the bladder has actually become infected with the organism. Bacteria are free living organisms. We have bacteria on our skin, in our intestinal and respiratory tracts, etc. which are just living there without causing infection. When bacteria invade tissue rather than living on the surface, then it is an infection. Cystitis actually means inflammation of the bladder rather than infection, but the use of an antituberculous drug suggests a need to help the body get rid of the organism. Very often infection is assumed to be the cause of inflammation and is treated as such, but inflammation is not always caused by infection. If your bladder is badly inflamed by the reaction to BCG, but the organism has not caused an infection, when you urinate after the treatment, you get rid of the BCG so the INH would not be likely to help.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

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16 years 9 months ago #6799 by ddoyle
Replied by ddoyle on topic Blood in urine following sexual activity
Warren,

I was doing some online research into the Bullous Edema+BCG and there is quite a bit of potentially confusing info out there, mostly well beyond my non-medical comprehension. Terms like "Tuberculous Cystitis" and other topics. The INH remedy did turn up some but results appear to be mixed. In all, somewhat confusing. I guess I'll just have to wait and see.
Meanwhile, still some blood in the urine...

David

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16 years 9 months ago #6786 by ddoyle
Replied by ddoyle on topic Blood in urine following sexual activity
Warren,

I do very much value your observation as a doctor. My Urologist did report the blisters just as you said, and of course he's not sure they are caused by BCG, but it's the most logical explanation at this point, so I guess the best course for now is to see if the anti-inflammatory meds help alleviate the problem over the next few days. Thanks for taking the time to give me your opinion.

David

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16 years 9 months ago #6785 by wsilberstein
Replied by wsilberstein on topic Blood in urine following sexual activity
Dear David,
Don't let the MD after my name fool you. As a pediatrician, I know very little about bladder cancer. I came late to this forum - 6½ years after my diagnosis - and I was amazed at how much some of the veterans on this forum know. I have no expereince with BCG. I was treated with mitomycin C. Still, I think my knowledge of medical terminology might shed a little light on your question.
Bullous means the doctor saw large blisters. Edema means swelling. Inflamed tissue swells. If it's inflamed enough, it may blister. From what I've read on this forum, some folks have breezed right through BCG treatments, but others have had bleeding and burning - all signs of inflammation. If you're unfortunate enough to have your inflammation in the bladder neck that adds to your trouble to whatever degree it obstructs flow of urine out of the bladder.
From the personal experience I had with my urethral stricture, I can tell you that obstruction can cause some nasty inflammation of the entire bladder, and it feels like it's right in the urethra.
I would assume, from my explanation of what bullous edema must be and the reactions I've read about to BCG, that you could be experiencing a reaction to BCG, but I don't have direct knowledge to confirm that opinion, nor do I have personal knowledge about the manifestations and symtpoms of CIS, so I can't tell you it's not.
I hope I've helped somewhat.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

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