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Crohn's Disease
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Posted 6/27/2013 10:48 PM (GMT 0)
I do Remicade infusion every 2 months and I take 100mg of 6 mp everyday.  When I get the infusions for a month I feel great.  after that it seems the blood comes back and im living in the bathroom.  Is this normal after a month of remicade the symptoms come back, is there a light at the end of the road.  This emotional rollercoaster is insane.  for one month im myself and another month just miserable, until the remicade infusion............  And then im myself again and back down.  Up and down. 
Posted 6/27/2013 11:13 PM (GMT 0)
Answer,
Report this to your GI and have the infusions closer together or increase the dose (which is doubtful). I know you can tell as it wears off. I went from 8 to 7 to 6 weeks, communicate with the staff and the doc. This is sort of the normal route. Unless you speak up the Dr. thinks everything is fine. I never took 6mp what ever that is. Entocort or the generic on and off was what I took for awhile while on Remicade. Cimzia didn't seem to cut the mustard.

Hang in there, Keep Calm and Carry On.

T

Better Living Through Chemistry
Posted 6/27/2013 11:14 PM (GMT 0)
It sounds like you are not getting full coverage with your current remi dose schedule. Talk to your GI about making changes so that you can achieve a complete remission. That is the goal, and many people do get there on remi!
Posted 6/27/2013 11:50 PM (GMT 0)
I think I'm at the
Max with remicade for my weight. But I will ask my appointment is tomorrow with GI doc. I do have another ? What exactly is remission. Is that we're I'm only in the br once a day not bleeding an back to my normal self.
Posted 6/27/2013 11:52 PM (GMT 0)
In remission you should be without symptoms. No blood. No mucous. No pain. No fatigue.

Your bowel habits may be different now compared to before your disease - I have found that my motility seems to be less than great, but otherwise I have no issues.
Posted 6/27/2013 11:57 PM (GMT 0)
I can't wait for that day then that's for sure. Was such an outgoing person now I feel like I'm in a shell. Scared to go out.
Posted 6/28/2013 2:38 AM (GMT 0)
What is your Remi dose? Because technically they're based on your weight, but you can have 5 mg/kg or 10 mg/kg, which means that for every kg you weigh, then you get 5 (or 10) mg of the med. So if you gain 2 kg, then you get 10 more mg (or 20) of the meds the next time. At least, that's how I understand it.

I've heard of people getting 10 mg/kg every 4 weeks, so I am pretty sure you can go more often than what you're doing now.
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