Liz and Jan,
I don't know why I started feeling so bad so quickly, I'm every other week with Humira so it amounted to 14 days without plus one, two , three days, then I started to go south. It tells me that I need Humira more often if the margin is that close.
I do realize that he was not really talking an acute immediate situation that needed ER but a future consequence possibly sooner than later, but why does he even say it when my issue is fatigue and joint pain not my pouch? We all know that losing our pouches is a possibility, and we live in fear of it. It seems he says it to head off all discussions which is what confuses me? Why not discuss my issue? If he doesn't have an answer for my issue at hand he should just say he is not sure what is causing it. Instead, I had to take matters in my own hands by eliminating drugs which precipitated a negative event. It hasn't been confrontational with him in the past but I have been irritated when he uses the 'lose the pouch' language. I told him that I will need to be near dead before I relinquish it, so am I near dead? No, I'm not near dead so let's not talk about losing the pouch let's talk about my issue, right?
I will be having this discussion with him next Tuesday but wanted some feedback here first. I didn't tolerate Imuran that well when it was prescribed the first time around, prior to Humira. The combo of the two though has been a negative for me -for months now. I've posted here about the fatigue and joint pain, it has gotten so bad that I can hardly walk, my feet are beet red, feel scalded, and every joint in my body feels disintegrated and inflamed. this is real, I'm not imagining it -he seems not to care about the fatigue or joint pain because he won't directly entertain that it even exists. He just says, take the drugs.... That's the problem for me right now.
MK
I would love to have an email exchange with him, he only does phone and he is adamant and the supposed expert -which causes me to doubt myself and just roll over, then shut up.