Did anyone stop BCG treatments after severe spasms and urination?

Up to you and your urologist/oncologist. To me it sounds you are not fit for BCG. I do recommend a DNA panel like Altera. Some mutations are chemo refractory unfortunately.

My husband suffered a severe reaction/infection to BCG in December 2024 called BCG Induced Cystitis. He has spent the last year undergoing treatment for that infection and has finally been cleared as of 2 weeks ago. He was told he can never have BCG again due to this. When symptoms from BCG treatments become too severe it can be a BCG hypersensitivity which is an immune overreaction to the BCG. Some of the reactions are mild and others are severe. From personal experience, I would approach your situation very cautiously.

I’ve had 3 BCG treatments so far and I am have severe pain in a shoulders back and now it’s starting in my groin/ hips. I believe it’s my immune system over reacting and am wondering if anyone else has experienced this with BCG. My pain is at a level 7-8 whenever I move my shoulders and tramadol does not help at all

@marykayk

I am very sorry to hear about your situation. I've read from other people's accounts that what you are experiencing can happen. My husband had a very bad reaction to the BCG so I understand your concern. I would definitely speak to your urologist and strongly request treatment. It might also be helpful to see a rheumatologist as they deal with inflammatory responses. This was part of his treatment for his reaction.

@sileeno123 thanks for your message. I did speak to the PA at my urologist office at my last BCG treatment last Thursday She said it sounds like I have polymyalgia rheumatica (PMR) and said she’s never heard of BCG causing that. It is an autoimmune disease. With the BCG treatments revving up my immune system I am doubtful it’s just a coincidence. I see my PCP on Wednesday and plan to talk about this with him and ask for a referral to a rheumatologist.

I had a similar story. The first six were ok except that I started getting flu like symptoms on treatment five and it got worse with treatment six. There was always some urgency and pain after the treatments that lasted for a few hours but I didn’t expect the other side effects.
On my first maintenance period the three treatments were worse. Pain with urination and urgency that lasted for 12 hrs or so then the aches and pains, headaches and fatigue, nausea and aggravated rheumatism. I’m in my second three dose maintenance treatment right now. Just got my third dose today. I got the urologist to reduce the dose to 33% as the literature clearly shows no real change in efficacy with this reduced dosage. The side effects are still there but greatly reduced in severity and duration. In 12 hours I’m basically free of side effects and at 100% in 24 hrs. Most important is that I get several hours of uninterrupted sleep on the evening of the treatment. Something I’ve never had since the first treatment over a year ago. This worked for me and I encourage you to discuss with your doc and see if this fits your treatment. Every case is different so there may be circumstances that are significantly different from mine and won’t respond to reduced dosage. Good luck

@marykayk
There was aa post on another BC forum that sounded very similar to your situation. Someone on there did mention that BCG can cause arthritis so I looked up the name they called it. Here is the info I found:
"BCG (Bacillus Calmette-Guérin) treatment, especially for bladder cancer, can cause arthritis, most commonly as a form of reactive arthritis (ReA), a sterile inflammatory joint condition triggered by the immune response to the BCG. While usually a rare but recognized side effect, it's a systemic autoimmune reaction where the immune system, activated to fight cancer, can also attack joint tissues, leading to pain, swelling (often in knees, ankles, wrists)."

Thank you for this information. The urologist and my PCP don’t believe me that the BCG has caused all my pain but I still do especially after reading your comment.

@marykayk
Sorry to hear that - but I definitely support your thoughts as you know yourself better than they do. I hope that you will be able to see a rheumatologist and I would tell them your concern about the BCG. Rheumatologists are very good at finding the causes/reasons for pain.