What do you wish youd known?

[aideen33]

My new doc that i saw today says its past time to get me off steroids (Im approaching one year of continuous steroids) and if humira isnt working, and the inability to come off steroids tells us it isnt, that its time to try something else. He has had good results in the past with moving patients from humira to remicade and wants to try that next.

Im on Azathioprine already, he wants to increase from 50 to 100mg/day pending labs, which he wants to continue and will start the remicade once we get insurance approval. My question to you lovely and oh so helpful folks is.... Ive read the papers etc, but what do you wish youd known before starting that you know now?

 

[FrozenGirl]

Hmm, Remicade is a pretty easy drug for me but some things I wished I thought to ask at the start
-Antibiotics, my clinic the policy use to be if you are on them you needed to call and get your docs to give clearance for going ahead with Remicade, even if your GI was the prescriber ( that has since changed but I ran into an issue once and almost had to delay an infusion)
-waiting policy: depending on your clinic you may have to wait after you finish your Infusion to watch for a reaction. Some clinics once you get past so many doses you can sigh a liability form and leave right after
-Blood work: my clinic offers to draw blood work of you bring your rec and they will keep it on file. No one told me this for months so I was getting poked twice a month when it could have been once
- Availability of time slots: every clinic has different operating hours, some are open only standard 9-5 others are expanded to evenings and weekends. You may want to consider this if you have a choice in location.

 

[aideen33]

Thanks a bunch, thats precisely what i was looking for. Things that I wouldnt have thought to ask necessarily. They gave me the scary "this is a potent drug" form but i wouldnt have thought to ask about the blood draws for examples