I called the GI doctor today - of course, he's out of the country for three weeks -- he'll be back next week. I like and trust my GI, and I get a little tired of telling my life story to strange doctors (well, all doctors are a little strange. What I mean is, doctors who are strangers to me... my daddy told me not to talk to them), so I wasn't overly excited to hear he was gone. His nurse said my GI has called in from across the world a few times, and he has always asked how I'm doing. I don't know if I should feel flattered or embarrassed. I'm goin' with flattered. ;)
I called because I will be in serious trouble if I stop taking steroids tomorrow. I'm already crashing hard and it would be a big jump to go from my current dosage to nothing. I spoke with another GI doctor - the one who talked me through my first Remicade treatment. He's a super nice guy, and very knowledgeable, so while I still would much rather have spoken to my real GI, this was okay. He is concerned about my ability to fight the kidney infection because of all the steroid stuff.
Short science lesson: everyone's body produces steroids every day. When you're sick, your body makes more steroids to help you get better and cope with the physiological stress of being sick. When you take steroid medication long-term, your body stops making its own steroids. So, if you get sick, your body doesn't kick in to help you fight it off. You may require "booster" doses of steroids to help your body cope. Also, the doctor says, some special people, like me, have bodies that "forget" to start making steroids again when they come off long-term steroid medication, since the natural steroids have been suppressed for so long. So all this results in the withdrawal symptoms I've been experiencing. You can actually go into shock from this, especially if you have an infection - perhaps why I've been feeling so crummy?
So, the new plan is not very fun, but I'm on board, I guess. I'm going to increase the steroids until the infection is gone (which hopefully will help my body kick in and fight the infection), and then slowly taper off over a period of thirteen weeks. Yes, thirteen (13)... which seems like forever to me. I've been on a lot of lousy medications, and this is the one I hate being on the most, but a few positive things:
- Usually, as I taper off, all my UC symptoms come back with a vengeance, so I yo-yo up and down with steroids for ages and have to throw in some new immunosuppressant to get off this one without bleeding internally to death or something. This time, I don't have that problem, praise God!
- I hopefully can avoid all the withdrawal symptoms by tapering off this slowly. That means no more crashing!
- The last nine weeks will be on such a low dose that (I'm hoping) it won't affect me or make me feel weird.
- This is just a part of the investment so I can be healthy for the rest of my life.
- This will (Lord willing) be the (drumroll, please) LAST time I'll ever have to take steroids. Ever. Can't wait for that day to arrive. Please start planning a party. You are all invited, and it's gonna be a doozy. ;)