visit went the doc went well today. steroids are definitely awesome, but only to be used short term. we're going to taper the steroids off during the few weeks it should take for the humira to work. 30 mg for a week, then 20, then 10, then 10 every other day, then done. by then, it'll be up to the humira.
if it works, awesome, we found the answer and we stick with it.
if not, less awesome. i'll go on short-term med leave and go through another round of tests to figure out why my intestines are being so stubborn.
my GI rocks - he sat with us for a good long time talking through everything and answering my bajillion questions.
also, we asked about probiotics, and he prescribed VSL#3 and gave me some samples. walgreens says aetna refuses to cover them, and they'd cost $150 retail. which is bullshit, because you can buy it direct for $80. so we think they didnt really submit it to aetna, or otherwise screwed it up. happens all the time with this location - i drive to a walgreens in another town rather than deal with the one in my town, but the one in my town is 24 hrs and i needed the steroid refill tonight. anyway, if it's covered, i'll get it. if not, i won't. i can't afford to spend $$ on something that might not work. i could always go back to making my own yogurt, though i've been eating so much this year i've made myself pretty sick of it. but i was going to try making almond milk yogurt once I had energy.
the steroid-remission has been a nice vacation from being sick. the mouth sores are gone, and the bleeding has stopped, so the anemia should be getting better. i'm going for bloodwork next week to get the numbers, but hopefully we're finally moving in the right direction. this feeling normal thing rocks. sure i still get nightsweats, and insomnia, and bad gut pain, and i'm tired, but it's more like having a usual stomach bug rather than IBD. much easier to deal with.
only problem i can see is that I get real grouchy and don't have alot of patience for dealing with bs. i had a bit of a swearing fit at the office today when our stupid program was broken yet again. can't make a habit of that. but i'm much less miserable than i was 2 weeks ago. yay!
Detective stories
1 week ago
2 comments:
That's great that you found a GI that will sit and take time w/you. I feel like there is someone fighting w/me when I have a good doc. I hope that this dose of pred helps you out. Why did you switch from Remicade to Humira? Does your insurance cover Humira? My doc said that it's expensive and they usually don't cover UC patients. Just curious. Good luck!!
Remicade is not working for me, even at 10 mg/kg. my GI thinks I've formed antibodies to the med due to the mouse component. Humira seems about as expensive as Remicade, and luckily my insurance covered it. It should get the indication for UC in 2012, but I hope it's sooner. I think it's silly that the FDA makes a distinction between a chimeric TNF inhibitor and a fully-human TNF inhibitor and says you can use one for crohns but not UC because the company didn't ask for that indication yet. plus, it's administered with the humira pen, much cheaper for the ins company than a 3 hr remi infusion. bureaucracy FTL
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