An intense reactive arthritis after BCG no. 15

7 months 1 week ago - 7 months 1 week ago #61642 by Alan
I am just seconding Joea73 that continuing BCG is probably a no go. You don't want to ruin the bladder as you go. The vast majority of patients are unable to complete the complete protocol of years so do not despair! There is no "exact" procedure anyway. You'll note in my profile I was given 6 weeks of BCG, 6 weeks off and 6 weeks on. My URO studied under Dr. Lamm and he used this protocol on my case and am still around 15 years later.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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7 months 1 week ago #61640 by joea73
Hi Jnani,

Sorry to hear that  you have been having terrible time after BCG #15,   I do not think you should continue with BCG treatment.  The added efficacy would not justify side effects as reactive arthritis is immune related side effects caused by immune response to BCG treatment.  I have not medical education so below are some information you may want to refer to when you and your doctor are evaluating your treatment plan.

If it is not immune related side effects, there may be some treatment which reduce the scope of the side effects, but if it is related to immune response in your case then immune suppressing drug may help but it also reduces immune response which is what kills cancer cells in the first place.

Incidentally, there was a study done comparing the efficacy and side effects between different BCG maintenance scenarios,  The study says that there is only 8% added benefits preventing recurrence between 6 weeks induction + one year maintenance, i.e. your situation vs 6 weeks 3 years of maintenance.  The study supports what Dr. Michael O'Donnell of Iowa University who would not give the 3rd year maintenance because the side effects would not justify little gain on efficicay6 with 3 years maintenance.   In other words, you have completed 92% of the 3 years BCG treatment protocol in terms of efficacy already.  

Reducing the BCG dosage to 1/100 may  enable you to continue BCG treatment, but there are no data if that amount of BCG still causes reactive arthritis and  how much you will benefit from the reduced dose.   Alternatively,  intravesical chemotherapy can be tried. But there are no studies done to see the efficacy of maintenance intravesical chemotherapy when one year BCG treatment is already completed.   Instead, if you experience recurrence in future, then Gemcitabine + Docetaxel sequential treatment has shown to be very effective.  So, you have a backup plan.   Hopefully, you wont experience recurrence.

Normal rage of WBC, leukocytosis is 5000 - 11000.   23,000 is considered high but I expect  WBC, leukocytosis cunt to increase because BCG treatment.   

best luck

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7 months 1 week ago #61639 by Jnani
Hello to all,
Completed BCG no. 15 (6,3,3,3) on Feb 13, had quite an intense systitis for 3 weeks and then, started extreme weakness and general body pain, followed (same day) by 2 ankles' pain that made all other pains unfelt. paralyzing, not possible to stand or walk.

Various examinations taken at the hospital, including ankles puncture yielded a conclusion of a 'reactive arthritis' to the BCG.   It is the 2nd time that the body reacts further to ~local bladder inflammations.
it is possible that I am now marked as a non-fit to BCG which is a problem.  Protocol still has approx. 1.5 years to go.
Asked the head of Infectious* diseases dept. who closely monitors my situation, whether we can use any sort of preventive treatment at the time of the next BCG, 6 months from now, She looked a bit skeptical and we agreed that we will give it a good thought.
* If there is a known workaround that can be used, in order to allow completing the BCG protocol,  I will be happy to learn.
The last thing my prof. knew before he had to pull off for a week due to an emergency, was the weakness.  Early next week he'll be brought up to speed and I'll hear what he thinks.
*Ina blood count before deciding to get me to the hospital, WBC, leukocytosis was over 23,000

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