Thanks to all of you! I got some Zofran to try with my dose for tonight... My doc suggested trying the Zofran with the full 50mg before dropping the dose to half. So I guess I will give it a shot ... Another 16 hrs of extreme nausea does not sound fun, but if it would help in the long run, it's so worth it. I am scared with my CRP - I've never seen it that high, though I suppose there's lot of room for more inflammation in my guts, so I should be relieved?
NCOT - yes, I feel down pretty much most of the time. It's darn frustrating to be so sick every day. I'm with you also on the sleep thing. I go to bed at 10pm and sleep until 7:45 each day. I am still exhausted every day. I just try hard to keep up with my daughter, but her cheer practices (she used to do gymnastics, now competing in cheer) -they go until 9pm!!! ugh!
I forgot my budesonide suppository last night and this morning bled and bled and bled! They're not that bad, and seem to work better than the enemas. The enemas go further, but my worst is the rectum, so that's where these stay. I am allergic to all the mesalamine products. The cortenemas worked alright, but I hemorrhaged after one night - they think I hit a deep ulcer which then went through to a hemorrhoidal artery causing the blood loss of scary amounts. (I was down 3 transfusion units after that) So I stay away from enemas. Also the budesonide is more quickly metabolized so has less systemic effects which is good for my bones.
My blood levels show I am still anemic, but my ferritin is sky high (487 or something like that). I guess that's from inflammation. Who knows. My iron levels are only 20, but last time they were down at 15, so... the binding percent is low, but again, not as low as i've had it. So I'll hold off on infusions.
I'm rambling on now... I know it could be much worse. Several people on here are worse!
Thanks again for listening everyone. So helpful! BTW - I just got my flu shot and the Tdap - pertussis is epidemic in CA now. I'll be traveling there over the holidays. Wanted to be safe!
Post Edited (sr5599) : 11/9/2010 12:42:08 PM (GMT-7)