Ongoing symptoms following BCG treatment

From experience I too have had long term pain/ spasms but no blood.  

I’m 4 years in and have had total of 21 BCG treatments.  15 with Tokyo version (which may be what you have in Australia) and 6 with Roche.  Currently in week one of three week maintenance.

I seemed to have had more persistent symptoms with Tokyo.  The Tokyo does have higher amount of the bacterium something like 80mg? Vs 55mg?.

my doctor had reduced Tokyo to half dose.  And with Roche I had 1/2 dose at first and now getting 1/4 dose.

I seem to be having less long term symptoms with the lower dose.  I also don’t go the full 2 hours.  Lately it’s been just over an hour.

I seem to react strongly as per your experience.  It’s a double edge sword.  Strong reaction means good immune response but more symptoms like you are describing.

I am NOT qualified to answer to your question from personal experience  as I have not been treated with BCG.   But I have seen some posting similar situation that though mycobacterium tuberculosis was not confirmed but the patient went on 9 months with multiple antibiotics treatment specific for tuberculosis treatment. Tuberculosis caused by intravesical BCG is so rate that  only 1 case is reported in a year in the State of California.  In the US with population of 330 million, 7,102 cases of tuberculosis were reported to Center of Disease Control (CDC), of which 121 cases were Bovine tuberculosis which is caused by Mycobacterium bovis, (M. bovis)). BCG is attenuated M.bovis.   Majority of 121 people who contracted Bovis tuberculosis are from Mexico and other countries of the south of border.   The reason why they developed Bovine tuberculosis is because they eat unpasteurized cheese and drink unpasteurized milk.  Some live in Michigan.  Deer's they hunt   and eat could have caused people get infected with M. bovis or  sometimes butcher get infected from the cut.   MERCK manufactures about 800K vials of BCG for bladder cancers each year, so I estimate that  300-500 vials of BCG are prescribe in the US each year.  So, it must be  extremely rare that BCG treatment causes Bovis tuberculosis.  

Dr. Lamm who is considered as a guru of treating NMIBC with BCG published in 1986  on BCG toxicity and its treatment.  If patients suffer severe or prolonged symptoms, treatment wit 300mg isoniazid daily, which I believe is one of antibiotics you are taking, and , diphenhydramine (antihistamine) and acetaminophen (pain reliever) or ibuprofen is (anti-inflammatory drug recommended. But it sounds like he did not put the patient with other antibiotics for tuberculosis.  Most of the patients with high fever in his experience were not hospitalized but if patients with a simple uncomplicated febrile response to BCG cannot be distinguished from those who will suffer systemic BCG infection or anaphylaxis. Therefore, we recommend that such patients be hospitalized and treated with antituberculous antibiotics '

Dr. Michael O'Donnell of University of Iowa, another GURU for NMIBC authored the article on Infectious complications of intravesical BCG immunotherapy.

Localized persistent cystitis (manifested as severe urgency, frequency, and dysuria) even after discontinuing BCG suggest development of BCG cystitis. This is an uncommon condition that presents with systemic symptoms and sterile pyuria (eg abnormal urinalysis with negative bacterial cultures). Symptoms may continue for weeks to months despite antimycobacterial therapy, suggesting a hypersensitivity component. Cystoscopically, the bladder appears red, beefy, and irritated, typically with acute and granulomatous inflammation. In cases of severe BCG cystitis, systemic steroids (in the form of a three to six-week [rapid to slow]  prednisone  taper) can provide rapid and durable relief from unremitting cystitis symptom. Given risk for potentiating BCG spread, the patient should be maintained on antimycobacterial therapy while on steroids.

www.medilib.ir/uptodate/show/2973#rid22

Since CT did not find anything like tuberculosis in your chest,  it will be difficult diagnose if you developed M.bovis tuberculosis or not.  So, I guess they are doing the treatment for tuberculosis as precautional manner.

Hi,
I completed my 6 week BCG treatment approx 3 months ago and find that many of the issues I experienced during the treatment exist today.
These include burning pain during urinating, passing blood and night sweats etc. I am under a specialist at a TB/Chest clinic here in Australia, but at this stage no firm diagnosis has been offered. 
I have been offered a 9 month mixed drug treatment program, which I understand would be appropriate if I had contracted TB as a result of my BCG treatment.  My recent CT SCAN and ongoing urine testing have so far indicated I do not have TB.

I am very confused and concerned that there is no positive remedy that is on offer.

I would certainly appreciate advice from forum members who have  found themselves in my position.

Thank you for your feedback, Barry