BCG Side Effects: my toughest side effect is lower back pain

Posted by jcold5619 @jcold5619, Apr 14, 2024

I’m currently in my 5th week of BCG treatment. I’m experiencing numerous side effects, which I was expecting, and a few that I wasn’t.

Presently my toughest side effect to deal with is lower back pain. Prior to starting on the BCG treatment plan I didn’t have any issues dealing with my back.

I’m at the point now where it is almost impossible to do anything without experiencing tremendous pain.

Is this fairly common?

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Profile picture for vickyhay @vickyhay

During the induction, you should be getting the full dosage, this is the most critical phase. Due to the ongoing BCG shortage, if maintenance treatments are given, many practices only give 1/3 dosage. As it was explained to me this afternoon, the entire vial is reconstructed and must be used within one hour. Hence three patients are treated during the hour, if not - then the rest has to be thrown out!

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Great input.

What amount constitutes a “full” dose?

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Profile picture for jcold5619 @jcold5619

Great input.

What amount constitutes a “full” dose?

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Having the full BCG vial ... in contrast to 1/2 or even 1/3 of it.

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Profile picture for vickyhay @vickyhay

Having the full BCG vial ... in contrast to 1/2 or even 1/3 of it.

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Thanks Vicky,

I need to find out.

The room has always been set up and ready to go when I arrive. I always see the box for the BCG and the syringe, which has already been filled. Not sure though if the entire vile was used or not.

I just assumed they were giving me what was needed.

Hmmm

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Profile picture for jcold5619 @jcold5619

Thanks Vicky,

I need to find out.

The room has always been set up and ready to go when I arrive. I always see the box for the BCG and the syringe, which has already been filled. Not sure though if the entire vile was used or not.

I just assumed they were giving me what was needed.

Hmmm

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I can assure you that with the BCG shortage, they would not waste any of the solution.

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Profile picture for vickyhay @vickyhay

I can assure you that with the BCG shortage, they would not waste any of the solution.

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Had my 6th treatment yesterday. It was a wonderful afternoon and evening. Lol. The cumulative effect of this last 6 weeks is taking a toll. But I made it.

Found out I have been getting a full vile every week.

Now for a 7 week break before a cystocopy.

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Profile picture for jcold5619 @jcold5619

Had my 6th treatment yesterday. It was a wonderful afternoon and evening. Lol. The cumulative effect of this last 6 weeks is taking a toll. But I made it.

Found out I have been getting a full vile every week.

Now for a 7 week break before a cystocopy.

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Enjoy the break, @jcold5619. How is the recuperation going from the 6 treatments? How are you feeling today?

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Profile picture for Colleen Young, Connect Director @colleenyoung

Enjoy the break, @jcold5619. How is the recuperation going from the 6 treatments? How are you feeling today?

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Thanks. Honestly not quite as well as I was hoping for. Could be I was hoping for to much but numerous side effects are still with me.

Fatigue is still strong along with joint and back pain. Nauseous feeling is pretty much gone.

Hopefully I see more changes in the weeks to come.

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I have a congenital obstructed ureter, I’m 79 and never had issues til of late. I’m having surgery in a few weeks and concerned my kidney will give out before then. I have constant UTI infections (went to the hospital with sepsis). The drs don’t see the urgency and I’m petrified I’m going to lose a kidney. I’m currently on Cipro. I read as much as I can. They mentioned nothing about limiting my magnesium intake which I see I must. My GFR is currently 35 and I don’t want to go on dialysis. Did anyone have these issues? I’m a little scared of the stent since I heard it’s extremely uncomfortable, but at this point that’s not my concern. Supposedly I have a great surgeon. I hope that’s true.

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