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Reply to "Stopped Humira, it was a bad idea"

I don't know if he is fear mongering with you, or just being non-specific. I believe that when he says you risk losing your pouch, he is talking about a future possibility, not an immediate, acute danger.

Both Humira and Imuran stay in the body for quite a while, so a few days one way or the other should not make that much difference. But, compared to Remicade, they clear faster. When I had surgery to remove an adrenal gland, I was on Humira weekly at that time. Neither my surgeon nor my rheumatologist could say whether I should stop the Humira before surgery to avoid possible infections and what-not. I compromised by skipping the dose the week of surgery, then resumed it the week after. I did not have a rapid cascade of inflammatory symptoms. But, then again, I was taking it primary for arthritis symptoms.

I agree with Liz that if you are butting heads with this GI and can't seem to get on the same page, maybe it is time for a new doc. I have been pretty lucky to have doctors who are straight with me, but allow me to make final decisions regarding my treatment. Obviously, the patient is the one assuming the risk, so you are the one who should decide which risks you are willing to assume. It is not clear cut, and just because a drug is proven effective, it is not equally effective for all. The same is true for side effects. I am not saying your doc is an idiot or even wrong, but he is not connecting with you in a meaningful way. I'll give him the benefit of the doubt and maybe he's been swamped with work and is feeling challenged by a patient who he sees as non-compliant. It happens. But, it does not seem like he is trying very hard to make you compliant- such as suggesting an appointment to discuss your concerns and to see if something new is going on.

I also agree that you are probably misinterpreting his message to mean you are headed for a crisis and need to be hospitalized. Hospitalization depends on your current situation, not a potential one. Again, this is all about communicating.

I guess that is why I like direct emails with my doctors. That way there is an actual exchange, not phone tag after a message left with someone else.

Jan Smiler
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