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Remicade question

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Posted 1/23/2014 3:35 AM (GMT 0)
Question for those who are on Remicade or have taken Remicade:

I have been getting Remicade infusions since the beginning of July. After my loading doses, I was getting a normal dose every 8 weeks. I was still having some symptoms so my doctor doubled whatever the normal dose is. After doubling the dose I was feeling a lot better and having very little to no symptoms. I was having 2 basically solid bms a day and no blood. It was amazing! But after 4-6 weeks it would wear off and I would basically be back in a flare.
My doctor then changed my dosing to every 6 weeks (at a double dose still). However after my last two infusions at 6 weeks, I was still having symptoms around 4-5 weeks.

It is so frustrating! I feel great then a few weeks later I feel awful again and am basically counting down the days until my infusion appointment. The GI's nurse told me I was at the maximum dosage but that my GI could possibly move my infusion to every 4 weeks for a short time. I called him about this but have yet to receive an answer. Does anyone else have this problem or had it when they first started Remicade? How long should this last? The Remicade works, I just wish it worked all the time. Or has anyone heard about doing Remicade every 4 weeks?

I am also on 75mg of 6mp everyday.

Thanks!! (P.s. my signature isn't up to date about my Remicade infusions)
Posted 1/23/2014 4:52 AM (GMT 0)
Sounds tough. We adjusted doses multiple times, but got in remission after that same double dose(10 mgs per kilo) at 6 weeks with 6mp. No offer of 4 week intrevals, so I can't say whether it is safe or not...thinking no. Your doc should test you right before an infusion to see if you have therapudic levels in your system, or if you are metabolizing it faster than the norm. Maybe they can ramp up the 6mp?
Posted 1/23/2014 4:51 PM (GMT 0)
I had a similar situation. They bumped me to six week and increased the dose but I wasn't getting any better. No one ever mentioned 4 weeks to me. In my case I was getting really sick and I was totally fed up at that point since I exhausted all the meds I was willing to try. I opted for j pouch surgery. I am doing really well today. Getting Remi every four weeks sounds a bit much.
Posted 1/23/2014 5:03 PM (GMT 0)
Katmom: I figured every 4 weeks was probably not safe either, I hate putting all of those chemicals into my body anyways...but the nurse said ask? who knows.
My doctor checked my levels with the 6mp a few months ago (I've been on the 6mp since April) and I was in therapeutic levels. I'll ask about upping to 00mg a day instead.
He checked some levels for Remicade right before an infusion after he had first doubled my dose and I don't remember if he had said I was in therapeutic levels or not. I'll ask. He did say I had not built up anti-bodies for the Remicade yet.
It is just very frustrating. I'm ready to be better.

Glad you both got into remission, gives me hope.
Posted 1/23/2014 5:34 PM (GMT 0)
Also, some people move on to Humira when the Remicade doesn't help and have success with that. Good luck.
Posted 1/23/2014 7:01 PM (GMT 0)
I did the normal 3 loading doses at 10 mg/kg. Then when waiting to do my first 8 week dose (@10 mg/kg) we were also tapering off prednisone at the same time. Things took a turn for the worse so we did my Remicade at 7 weeks (@ 10 mg/kg), blood draw showed very little Remicade in my system. I guess I process it quickly. So we did my next one at 4 weeks (@10 mg/kg). I am scheduled again in another 4 week interval (@10 mg/kg) and will be meeting with my GI before that dose to discuss most likely going to 6 week intervals (@ 10mg/kg).
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