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Remicade Infusion Therapy

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Ulcerative Colitis
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Posted 2/19/2013 11:07 AM (GMT 0)
Hi Sue, you should ask your doctor to test you for the bone density, simple x-ray test. 9 months of steroid is a long time to take. Also ask him for the calcium supplement and how to avoid broken bones...sorry to hear that. My doctor was worried after 3 months of steroid, and I had to reduce the steroid gradually.
With steroid I also experienced severe fatique as I was reducing the intake.
Posted 2/20/2013 5:46 PM (GMT 0)
I tried getting off steroid, kept coming out off remision. Started 6mp three mnths after diagnosis in 2008. Took six months for remision. Then it started to make me very ill tried taking 6mp at night still sick every day. I stopped taking on my own. I refused to see the G.I. Doc because he didnt care if the drug was making me so ill i couldnt function. Told me i wasnt a good canidate for remicade. I found a new doc that i love. Didnt see any reason that i shouldnt be able to take remicade. So that is where i am today. Im hoping this helps. Ive had to stop working through this journey and hope to get back to my life
Posted 2/21/2013 2:06 AM (GMT 0)
Today was my 2nd Remicade infusion, and everything went smoothly again!! No adverse reactions, and I still feel fine now. The first infusion brought about some relief, but most of the symptoms remained. All symptoms came back about two days ago. They said that hopefully this time I should get even more relief for longer, but I still won't have complete relief until after my third infusion in a month. I got a 500mg dose, which I'm not sure is the same dose as my first infusion. Tapering down on the prednisone, and now I'm doing 4 Pentasa tablets 2x daily for a total of 8 tablets. So hopefully things continue to go well, for me and for everyone else!!
Posted 2/21/2013 2:16 PM (GMT 0)
The same kind of thing happened to me - a few days before my infusion I would get really tired, looser stools, and just all around not feeling good. It took about six months before I finally made it the entire 8 weeks feeling good and no symptoms so I guess that's about three infusions. I used to call Remi my energy juice because I felt like someone had wound me back up again! I wish you continued healing with the Remi!
Posted 2/21/2013 6:25 PM (GMT 0)
I have not had so much luck ... I was really hopeful, but I've now had 8 remicade treatments at 5mg and no improvement at all, and the doctor is not convinced that increasing the dose will make a difference ... I have heard that most people respond well to it, so I wish you the best of luck! I hope it helps you! As for me, I'm on to surgery cry
Posted 2/21/2013 6:26 PM (GMT 0)
Make sure your GI has "emergency doses". Sometimes I can't make it the whole 8 weeks or now possibly even 6 weeks.
Posted 2/22/2013 1:18 AM (GMT 0)
Well, I'm the day after my last infusion and I feel pretty darn crappy. More urgent bowel movements and I feel generally cramped. Started to feel this way yesterday evening. Has anyone felt like this before after getting a Remicade treatment? Or is this just the colitis acting up before the Remicade can kick in?
Posted 2/22/2013 8:09 AM (GMT 0)
I started remicade october 1st 2012. I noticed some improvement but after my last dose about a month ago, i started having symptoms a few days later. Now im in a full flare for a week now. I dropped all gluten, wheat, dairy, processed food, sugar, bad food all together and the blood stopped but im still going like 10-15 x a day with a lot of urgency. I have an appt tomorrow so will see what the gi queen has to say. Ive been in way worse flares in the past so i dont know if i want surgery but part of me wants to leave this disease behind me forever.
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