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remicade effect only one month please help

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Posted 1/19/2009 7:33 AM (GMT 0)
hi
I am after the second infusion this week I have the third.
only month after the second infusion the flare came back with full power
To what I know the effect of the remicade should last two month
is this normal that the effect is only month?
what I should do in this case?
Posted 1/19/2009 12:40 PM (GMT 0)
I can understand your frustration. The Remicade can sometimes take up to the third infusion to make a difference. My doctor advised that I not get my hopes up until then, and I learned from others on this site that they say a difference after the 5th. : )

Each person reacts to these medications very differently, so though it should be working a certain amount of time, it all depends on your body and how it takes the medicine. I'm sorry you have experienced an unpleasant flare with the hopes of being in remission. I understand that too.

Also, you are still in the beginning process of the Remicade, as the first three infusions are closer together, then you may receive an infusion every 8 weeks after the first three treatments. When I started Remicade I had many questions so I started writing them down. You get two hours in the chair, so I kept my nurse and doctor busy with conversations regarding the medicine and my situation. : ) Maybe you could start jotting down some of your concerns as well. I always feel comforted hearing information straight from my healthcare professionals instead of the literature online.

Good luck to you!!!

: ) Robin
Posted 1/19/2009 8:11 PM (GMT 0)

Talk to your GI about it, but there is hope - at least the Remicade does seem to be working (at least for a month).  The same thing happened to my son.  The first thing his GI tried was doubling the amount of medication given at each infusion.  When he still couldn't last the 8 weeks we moved his infusions so they were closer together - first 7 weeks apart and now 6. 

Don't give up hope!  The GI's office told me that a lot of people need to make adjustments with dosage, etc.  It doesn't mean the Remicade won't work for you.

Take care,

Nancy (son Ben,14,CD dx 3/06; Remicade, Asacol, Multi-vitamin)

Posted 1/20/2009 4:30 PM (GMT 0)
Not to scare or worry you, but for me..Remicade worked for about a week and then just stopped. I had three infusions and after the third my doctor took me off of it and put me on some other meds. Everyone is different though and like Robin said, be patient. Some people didnt start noticing it until after the 5th infusion. There are alot of other meds out there so if Remi doesn't work, don't get discouraged! For some, Remi was their miracle drug and put them into remission. But for others like me, it doesn't work to the full effect.
Good luck with the Remi and stay positive =]
Posted 1/21/2009 3:25 AM (GMT 0)
I am getting two different perspectives on the prognosis for Remi working longer term. From browsing this forum, I note that many took as many as 7 infusions, or a double dose, or both, to really get into solid remission. By contrast, a GI consultant that I have insists that if Remi is only partially working early on, then it's a sign it won't work longer term, because the normal pattern is for it to lose effectiveness over time. I hope that is not the case for us- I too have a short term response to Remi that doesn't nearly last to the next infusion. I am hoping they will move up my infusion frequency and/or dosage... even if this is no long term magic bullet, I would love to be back in full remission and rethink strategies from that perspective (plus get off pred) rather than in constant pain. Good luck.
Posted 1/21/2009 7:42 AM (GMT 0)
I cant take imuran/6mp due to allergy to them
only pred really helps me but I cant take this drug for a long term, beacuse I have five years active disease and my bone intensity is not good.
so I dont have others meds to try
Posted 1/21/2009 2:19 PM (GMT 0)
I can't take Imuran/6MP either. Sometimes it takes up to 5 infusions to see the full effect. I was still miserable and flaring after 3 infusions. I was even scheduled for surgery. But I had a c-scope in between the 3rd and 4th infusions, which showed that everything was healed excpet for the last few centimeters. So with the right combo of rectal meds and Remicade, I was able to stop most of the flaring. Don't lose hope yet!
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