BCG After Effects

Hi Vanlifer,Welcome to our friendly group.I’m so sorry that you are having such a rough time.I’m sure the people who have had these treatments will be along to offer advice and support.I hope something can be done to help.Best wishes Jane 

Hello Vanlifer, this may sound really stupid but a few on this group swear by Robinson Barley Water (Original) which appears to be kind to the bladder. May be worth a try? Hope things get better for you soon. Garviv

Hello Vanlifer

I've have had my 6 week induction of BCG and suffered some side effects, but I have heard that BCG has a cumulative effect the more you have. Have you spoken to your medical team about your joint pains? Hope you get some answers soon.

Sending you love and positive vibes ️ 

Ade xx 

Not something I can drink unfortunately.  Have a whole list of other things going on too.  If I was a horse I would have been shot by now.

I did keep saying about being in pain and they also could see how I was physically struggling but I was always told as its local it doesn't really have any effects on you.  It's totally turned my life upside down and gp is no help I'm stuck in limbo with this.  Thanks for your reply hope you are doing OK x

Hi Vanlifer

Reactive arthritis can be a rare side effect of BCG therapy. It may be worth speaking to you team again. It can be treated with a nonsteroidal anti- inflammatory such as Asprin, Ibuprofen or Naproxen ask your clinicians.

Ade xx

I think because I'm already on that type of medication, painkillers and gabapentin they kind of overlook it but this is way beyond things.  Every joint is painful and it's restricting life.  Before I started BCG I was off up in the hills of Wales now I can't walk to my local shop.  Totally fed up it's been a hard journey to this point as you all know but this on top feels like the last straw.

Debs x

Hi Vanlifer, why not go to PALS and explain that the medics are unreasonably ignoring you? As Ade says, it CAN have systemic effects, if they themselves believe the denial they are giving you, they need more training. PALS should be able to support you.

You could also ask your pharmacist about the safety of other anti-inflammatories such as turmeric. The turmeric-in-oil capsules really help manage my joint issues though these are not anything to do with BCG.

Denby

Hi Debs

It sounds like you need a medication review at the very least.

Love Ade xx

I have had the induction course (6 infusions) and two maintenance courses (3 infusions each).

I find my side effects have changed. Initially just felt warm for ~24 hours (except No.5 which set me back for 4 days). Now its mainly headaches for 2-3 days afterwards. Also occasionally get flank pain when I stand up.