@deidre77 My incontinence has been off the wall since after my first TURBT surgery, had my second TURBT 1 week ago. Whenever I stand from a sitting position it flows out into pad. I will find out Friday what treatments are in store. I have non invasive high grade bc. I hope I will be able to handle BCG as well as you are.
As for your question, I think each and every one of us must have asked this at least once (perhaps many times) and wondered when it pertains to our own lives.
I hope the remedy is found and you will feel better very soon.
@deidre77 so sorry that you are going through this. BCG can be a real challenge but the evidence for it impacting reoccurrence is pretty convincing. I had reactive arthritis after my 12th treatment and had to stop. Fortunately I have had clear cystoscopy for the last year so I’m hopeful that I’ll stay NED. There are alternative treatments to BCG. Have you discussed these with ur Doc?
@quahog I read where BCG can cause joint pain, so I’m curious do you have any autoimmune disease prior to BCG therapy? Did they put you on meds for reactive arthritis? It can be very painful.
@quahog I read where BCG can cause joint pain, so I’m curious do you have any autoimmune disease prior to BCG therapy? Did they put you on meds for reactive arthritis? It can be very painful.
@rafcer
no history of auto immune disease but have had minor osteoarthritis in one hand for the last couple of years. I spontaneously developed arthritis in right hip and knee five days after my 12th BCG treatment. The proximity to the treatment and the rapid onset of symptoms in two locations led my rheumatologist to suggest that it was reactive. Adding that to the list of side effects that we’re getting worse with every additional BCG treatment prompted my urologist to stop the maintenance program.
@rafcer
no history of auto immune disease but have had minor osteoarthritis in one hand for the last couple of years. I spontaneously developed arthritis in right hip and knee five days after my 12th BCG treatment. The proximity to the treatment and the rapid onset of symptoms in two locations led my rheumatologist to suggest that it was reactive. Adding that to the list of side effects that we’re getting worse with every additional BCG treatment prompted my urologist to stop the maintenance program.
No, not yet. I’m meeting with him again next week. Recent imaging shows no increase in the extent of obvious arthritic conditions in either location so I’m not sure it’s an ongoing event. An auto immune reaction resulting from the BCG might be ephemeral. I’ll see what he thinks. Thanks for the concern.
I have Osteoarthritis in my knees and had 6 BCG treatments. I had some burning , frequency and urgency but nothing very bad until 2 weeks after my last treatment I woke up and my knees, ankles, hands ,wrists, arms and back were swollen and the pain was excrutiating. I went to see my family Dr and he said every part of my body was inflamed even my nose and mouth. He did blood work and all my values were elevated especially my C. Reactive Protein and Sed Rate. He put me on steroids and I am waiting to see a Rheumatologist. Dr said I had Reactive Arthritis from BCG and I will never be able to get it again.
Urologist didn't have much to say except BCG is the gold standard and now he will have to find something else.
Good luck. I don't know if you have arthritis what will happen if you get BCG as I had a UTI 3 weeks prior to my last treatment and was told that was what caused Reactive Arthritis.
@deidre77 Saw urologist today and he put a hold on starting BCG treatments due to my Stress Incontinence. Since I would not be able to hold BCG in. Wants me to see an Urogynecologist for procedure called Urethral Bulking. I have a meet and greet on the 30th. Meanwhile BC is thriving in my bladder.
Hope you had a better appointment Thursday
Connect
Connect
Like
Helpful
Hug
Has anyone already have rheumatoid arthritis and urologist suggest BCG treatments? I’m curious because some patients get terrible joint pain from BCG.
@rafcer
I am sorry to hear you are experiencing the same difficulty.
I would like to know what your doctor recommends. I will be mentioning my problem this coming Thursday when I go for my 6th and final BCG induction.
Best wishes.
@pdomson
Sorry you are having this problem.
As for your question, I think each and every one of us must have asked this at least once (perhaps many times) and wondered when it pertains to our own lives.
I hope the remedy is found and you will feel better very soon.
Sending my best wishes.
@quahog I read where BCG can cause joint pain, so I’m curious do you have any autoimmune disease prior to BCG therapy? Did they put you on meds for reactive arthritis? It can be very painful.
@rafcer
no history of auto immune disease but have had minor osteoarthritis in one hand for the last couple of years. I spontaneously developed arthritis in right hip and knee five days after my 12th BCG treatment. The proximity to the treatment and the rapid onset of symptoms in two locations led my rheumatologist to suggest that it was reactive. Adding that to the list of side effects that we’re getting worse with every additional BCG treatment prompted my urologist to stop the maintenance program.
@quahog This is an eye opener for me. I have RA but in remission. Did your rheumatologist put you on any autoimmune meds?
No, not yet. I’m meeting with him again next week. Recent imaging shows no increase in the extent of obvious arthritic conditions in either location so I’m not sure it’s an ongoing event. An auto immune reaction resulting from the BCG might be ephemeral. I’ll see what he thinks. Thanks for the concern.
@rafcer
I have Osteoarthritis in my knees and had 6 BCG treatments. I had some burning , frequency and urgency but nothing very bad until 2 weeks after my last treatment I woke up and my knees, ankles, hands ,wrists, arms and back were swollen and the pain was excrutiating. I went to see my family Dr and he said every part of my body was inflamed even my nose and mouth. He did blood work and all my values were elevated especially my C. Reactive Protein and Sed Rate. He put me on steroids and I am waiting to see a Rheumatologist. Dr said I had Reactive Arthritis from BCG and I will never be able to get it again.
Urologist didn't have much to say except BCG is the gold standard and now he will have to find something else.
Good luck. I don't know if you have arthritis what will happen if you get BCG as I had a UTI 3 weeks prior to my last treatment and was told that was what caused Reactive Arthritis.
@deidre77 Saw urologist today and he put a hold on starting BCG treatments due to my Stress Incontinence. Since I would not be able to hold BCG in. Wants me to see an Urogynecologist for procedure called Urethral Bulking. I have a meet and greet on the 30th. Meanwhile BC is thriving in my bladder.
Hope you had a better appointment Thursday