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Remicade working only some of the time

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Crohn's Disease
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Posted 12/21/2010 2:38 AM (GMT 0)
When I first get my shot, I feel great for about 1 - 3 weeks. Then the constipation and leakage start up again. I've tried laxatives but they take me from constipation to liquid D... ugh. Not sure where to go from here...
Posted 12/21/2010 3:10 AM (GMT 0)
it sounds like either you're building up a tolerance or you haven't reached max load yet, my rem wears off after about week 6, my next one is this wed. how many infusion's?

Posted 12/21/2010 3:26 AM (GMT 0)
Hi! This is interesting to me...I will have my 3rd infusion in 36 hours. I had the first one, then two weeks later the second, and now, the 3rd one will be a month later. I saw great results after the first one, not as much after the second one. I am hopeful this third one will be another "big boost" and I will feel much better. I have read it can take from 1 to 7 infusions to see noticeable results. I am SO SO hopeful this will continue to just get better for me, as I have felt horrible for almost 6 months. I still have all of the symptoms, but they are not as severe as they were, so I do feel it is working. Just guess I want "instant gratification!"

Merry Christmas to All!!

Posted 12/21/2010 3:29 AM (GMT 0)
Talk to your GI, maybe it's time to step up the dosage to a bit more per kilo, and/or get the infusions more often. Or maybe switch to another med.
Posted 12/21/2010 3:48 AM (GMT 0)
I was told that it effects don't normally show until the 3rd of 4th infusion and that it could take six months to see improvement.
Posted 12/21/2010 5:30 AM (GMT 0)
Thanks! That is good news, I am certainly hoping that it's true for me! I know we are in the Crohn's Disease forum, but I have Ulcerative Colitis. I wonder if results are about the same...

I do so enjoy being able to talk, and get answers here!

 

Posted 12/22/2010 12:24 AM (GMT 0)
My last infusion was my 4th. I hope it's true that it could take up to 7 infusions or 6 months to get the full effect. It's been years that I've been in a flare and getting REALLY tired of it.

Got an appointment with my GI in a couple of weeks. Guess we'll take it from there.

Thanks for your replies!
Posted 12/22/2010 12:39 AM (GMT 0)
Minou~~I feel as you do...for two years I have been pretty miserable. For me, diet doesn't seem to affect things. I eat very little anyway, but it doesn't matter. I have noticed in just the last couple of days, I have started to have more of the pus, blood, and ulcerative discharge. I wear a pad ALL the time, and wish I had bought stock in the company!! I am able to enjoy many things in life, but I hope for the day when I am "normal" again.

I wonder how I will "do" after this 3rd infusion. I then will go to every 2 months, but I do see my GI dr. in January.  He is very good, and I have the utmost confidence in him.

I will keep posting here, and hope to hear from lots of others "like me!"

Merry Christmas!

Daffodil

(Mollie)

 

Posted 12/23/2010 2:35 AM (GMT 0)
Daffodil, I know exactly what you're talking about. I wear a pad every day too. It was the thin ones for a while, then the leakage got so bad I had to upgrade to the thick ones. The Remicade brought me back down to the thins, to the point where I didn't even have to wear one at night. But the latest infusion doesn't seem to be doing it's job and I'm right back to the full blown pads. It's gross, embarrassing and... well, need I say more?

Keep your head up, you're not alone!
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