I have had Cd for a long time and am pretty educated on my own care....now it's all new again 17 years after my first surgery. I went to my GI yesterday. I have been feeling crappy (not literally, figuratively) lately. I have been on nothing and am restarting Pentasa today (long story about better to take something than nothing). Doc wants me on something stronger, but understands I am not ready for the next step yet and he understands why. He accepts that I have nixed Remicade and my reasons why.
1) If I have another fistula, he wanted Remicade. I asked if you can go right to Humira and skip remicade. he said yes. BUTTTTTTT would your insurance cover it if you haven't tried Remicade first? I can call my insurance and ask (I am a med insurance employee in case you don't know), but I want to know if it has been done before I ask especially since it is sometimes hard to get a atraight answer. Anyone know if this is an issue with their insurance?
2) Iron and B12 levels are extremely low. I have to do B12 shots each week instead of month and will run out of non-sore spots to inject. I am a chicken about doing it in my tummy even though my 80 year old Dad does it. Is it more tender in the tummy and is there a way to do it in your arm?
3) We talked about top-down versus build up theories of care. I am pushing for the build up theory and now have to consider if I am ready to make the step to 6MP or Imuran. Getting a scope 10/2 before I decide if I am at that point. This site is great, but I need some human contact to talk out the decision process. Any ideas who I can talk to to help me decide that has knowledge or how to find someone---CCFA meetings are poorly attended here and the next one isn't until mid-Sept.
Thanks for listening everyone! My husband listened last night and he is good, but I need to talk to someone with more expertise in the area
Dx'd '90 (emergency rupture), symptoms ignored long before that,
stable with Pentasa, '03 fistulas and bad flagyl reactions, only on B12 and vitamin supplements now
I'm riding on the escalator of life....