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I am curious if anyone has been told about this Reactive Arthritis—–as a result of BCG…extreme joint pain!!!! I was also reading an article that suggests there is blood test to see if a person as a gene called HLA B 27. If you hve this gene you should avoid using BCG.!!! Reiters Syndrome(reactive arthritis) is a direct result of BCG. It can also have some variable effects with your vision. Curious as to know if other people have been aware of this..and why the urologists are not being more open when talking about BCG!!!!
When I got into my second 6 week round of BCG and the following maintenance treatments the joint pain was way worse than the first round. While I never had any tests for anything (my first uro was totally unsympathetic to my side effects and I switched drs) I knew that my body had reached maximum tolerance. I discussed this with my new uro and he agreed that I had done enough BCG. He didn’t suggest that I do any tests for anything though. I don’t think that there is enough knowledge out there for the uros. They are good at prescribing but I don’t think all of them are good about following up on the latest research. I too had blurry vision while undergoing BCG but it cleared up afterwards. Arthritis is an inflammatory condition and I combatted my joint pain with antiinflammatory OTCs (Tylenol and ALeve) for the short term and then modified my diet and did a body detox. That has worked wonders for me. Whether that is the right approach for everyone I couldn’t say since I’m not medically trained. I asked about the effects BCG could have on hearing ability because my hearing has decreased over the past 2-3 years. I did have some hearing loss prior to my BC diagnosis. My uro said that he knew that chemo could affect hearing but had no knowledge of BCG doing so. My hearing specialist is not familiar with bladder cancer or BCG so he couldn’t comment. I was the one that had to educate him. To me it would make sense that BCG could affect all areas of the body because it causes an immune reaction in your body which is an inflammatory response. Unfortunately as we all have learned each person is affected in a different way. I think that in itself makes it difficult for drs to even talk about BCG because they don’t know how each person will react. This to me proves just how much we need to get more research going to find something to replace BCG that is far less toxic to the body. As for any remaining body pain I occasionally have some stiffness and minor pain in my hands, hips, knees and lower back. I stick to a simple healthy diet, use a massage cushion that my son gave me for Christmas and do yoga and walk a lot. I consider this a small price to pay to keep my bladder intact.
A rare complication, according to this site. You’ll have 50 papers you can read from this link on the subject. Good luck.
http://www.ncbi.nlm.nih.gov/pubmed/16220289
Greg
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