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Remicade Question and Pred Woes

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Ulcerative Colitis
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Posted 12/5/2011 6:38 PM (GMT 0)
Hi all! I started Remi last week. No reactions. Infusion was easy. B/c I had done 3 months of humira my GI chose not to do loading doses. So I will go back in 8 weeks. The infusion nurse was super nice. My GI has an infusion room in their office. Big comfy chairs. Lots of space.

Anyway, I started on pred. in the hospital which stopped the bleeding and frequency. So the remi is an overlap for when I get off the pred. But how in the world do I know if the remi is working?!?!

Now for the pred woes. I have been on it TOO many times. This time started 80mg via iv in the hospital. Down to 35 oral now. GI said 5 mg per 2 weeks. Want to go slow. But pred kills my acid reflux and gives me terrible gastritis. Happens every time I get to the 30ish mg mark. And my knees are killing me. Not to mention the insomnia. And i have ambien! Such a love, hate relationship w/ pred....

Thanks for listening! I'm feeling good. Just tired.
Posted 12/5/2011 7:10 PM (GMT 0)
I don't think you will know for sure but I would think that when you successfully get off pred and have no symptoms that you can probably contribute it to the Remi.
Posted 12/5/2011 7:47 PM (GMT 0)
I agree with Red. If you're able to taper off prednisone without having UC symptoms, it is probably working.
Posted 12/5/2011 11:11 PM (GMT 0)
pink, i still had symptoms while tapering off prednisone and beginning remicade. i was on prednisone for a month and then started 6mp and remicade. it was hard to know what was working/not working or causing my side effects. i ended up tapering slowly on the prednisone instead of my prescription of 5 mg per week. once i got off the pred, i had no symptoms so apparently the remicade was working. i didn't notice the prednisone helping me at all though. it wasn't until i started 6mp that i noticed a difference.
Posted 12/6/2011 12:08 AM (GMT 0)
Thanks guys! Also remembered we upped my azathioprine from 100mg to 150mg. So who knows at this point what is working! But yes agree w/ all until come off pred won't know if remi working. I go for a prometheus test Friday to see how I'm handling the increased dose of aza. I had been at 100mg for 6 years. My last prometheus showed I was on the low end of the theraputic range.
Posted 12/7/2011 12:51 AM (GMT 0)
I started pred in June 2009 and started remicade in July 2009 and didn't go off of pred until nov 2009 after my losing doses were done. The only way I knew it was working was because when I tapered before I would get bad right way when I was on the remicade I didn't. I think you will just have to go off it and see. I would probably wait until you have a couple infusions though.
Posted 12/7/2011 7:30 PM (GMT 0)
I was at 40mg of pred when I was on remi and I did the loading doses, I tapered down and when I was off pred I had some blood while on remi, I got very scared that it was not working. I still have a little bit of blood and go about an avg of 2x a day. Doc may up my dose or interval but he is being cautious, which I appreciate.
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