Hi Beth - Thanks for sharing you story. I'm kind of in the same boat. After the 4th infusion, I felt really good for 1 week, then started to flare again. My maintenance period already shortened to 6 weeks, GI doctor has agreed to increase the dosage to 10mg on the 5th infusion if the 4th infusion still doesn't work. What's your dosage and maintenance period? My next infusion is not until Sept. 17, I hate the wait.
Beth75 said...
Hi Vicki,
I began Remicade in April 2011, I was still on pred and imuran and flaring a bit. Within 2 days of the first infusion, I felt great and symptoms were mostly gone but a week later the flare came back. For me it took from April to November to get into full remission and I would take 5 steps forward and then 3 steps back, it was very difficult for me emotionally, b/c I felt like it should just work or not and instead it worked very slowly for me. I would be ok for a bit after the infusion then flare up again, eventually I was having less time between a flare up and an infusion. I got off pred in June 2011 and imuran in Sept 2011. I get my next infusion this Friday, looking forward to my 'spa' day, sitting in a recliner w/my heated blankets and a good book, then movie night w/my husband and sister : )
Best of luck to you! My heart goes out to you during this difficult time, its scary not knowing what is going to work and what isn't.
Take care,
Beth