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Remicade Question

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Crohn's Disease
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Posted 3/20/2012 3:38 PM (GMT 0)
I have my 4th dose scheduled for March 26 and I am on 5mg pred but since about this past Weds, symptoms have rapidly started coming back - I barely made it to work this morning - had to pull into a gas station for a pit stop - tomorrow, I think I will have to go back to Depends just to make sure I get to work in one piece

My question to anyone who has been on Remicade is, did your symptoms start back before your next treatment was due.

I've been on pred since Nov and 5mg is the lowest dose I've managed to get down to but right now, it's like I am on nothing at all even though I also take (2) 750mg Colazal pills 3x a day in addition to the pred

Talked to my nurse and she said my GI wants me to go up to 20mg of pred for 2 days then back down to 10mg - if at 10mg, I'm still having problems, then go back up to 20 till I have the treatment on Monday

After Monday, she will look at things and see if they need to try and move my Remicade doses up closer together

I managed to make it approx 6 1/2 weeks after my 3rd Remicade treatment and it had been moved up 2 weeks sooner than it was originally scheduled for but I was also on a pred taper so I've had a good bit of pred in my system till now

I really don't know how long the Remicade would have lasted had I not still been on pred

So to make a long story short, has anyone managed to make it the full 8 weeks between treatments or at least the full 6 weeks without being on pred also

I have to get off the pred and I'm not sure how I'm going to be able to do that if the Remicade still isn't controlling the symptoms well enough
Posted 3/20/2012 11:20 PM (GMT 0)
When I was on remicade I was getting the max dose -10mg/kg every 4 weeks. If you need it sooner, you need it sooner. I know your doc is trying to stave off an impending flare by having you up the pred, but that is really just a bandaid and will not help you, but only hurt you in the long run. JMO. It's too stressful to live like that. Common sense dictates that you should get your treatments as often as needed so that your body stays steady and doesn't do the flare/no flare/flare/no flare thing. They did that to me for a long time before they finally gave in and started letting me have it as early as I needed it. In the process I had 2 miscarriages and was a crazy person on yo-yo-ing doses of pred.

Insist that your GI give you the remi as early as you need it. Try that for a couple of months and if that isn't helping your GI may want to consider adding something like 6mp.

Good luck to you! I'm sorry you're going through this. I have ridden that roller coaster and it is NOT fun. Demand what you need. Don't take no for an answer because THEY don't have to live with it - YOU do. Hang in there and keep us posted!
Stef
Posted 3/21/2012 12:14 AM (GMT 0)
I think with Remicade, they can double up your dose if need be. When I was on it years ago, I got one dose on day 0, and was often given another dose on day 3 while I was still in the hospital. I rarely got to week 8 without symptoms to be honest. But that's been the case with every biologic I've been on, except Tysabri. Tysabri was the one and only medication I've ever used that a.) induced a full-blown remission and b.) permitted me to be completely symptom free for the entire time it decided to work, which was nearly three years.

Best of luck to you.
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