Posted 6/21/2014 1:34 PM (GMT 0)
Ishiman, I could be your twin! I had my first Remicade infusion in the May of 2011, 5kg and stayed in remission for nearly 2 years. I had a colonoscopy 2 months ago which showed active disease. My Dr. wanted to up my dose to 10kg but discussed my anxiety about it with the Dr. and went with 7.5kg instead.
He seemed upset with me at the last infusion and informed that 7.5kg every 8 weeks is still a relatively low
dose and that he has some patients every 4 weeks at 10kg. My issue is that for 2 years I was in remission at 5kg every 12 weeks. Even at the 7.5kg dose, I feel no relief a few days, or even weeks after the infusion. So it isn't as if I feel it wearing off before the next dose. I don't feel it at all. I understand I could bump it up again and try every 4 weeks but I feel like my body is saying it doesn't matter.
My reaction for this last higher dose infusion was I noticed a burning sensation at the infusion site during the infusion that I didn't have before. But I wasn't knocked out any more than usual the next day. The one peculiarity which may be my anxiety is that my blood pressure shoots up a day or two after the infusion and I have to go back on Lisinopril (like you) and Hydrochlorothiazide to keep it down. This also happened when I first started Remicade and my BP has never been as low as before starting.
I am not sure what I want to try next. The Dr. mentioned adding Imuran, or switching to Humira. I know everyone is different but I don't read a lot of long term success stories for patients who have added Imuran to Remicade that was not working and had any real remission.
Like you I also take Remeron for sleep and Clonazepam for anxiety. I am a 44 y/o male diagnosed with Crohn's in 1979 when I was 9. One small bowel resection in 1983 put me into med-free remission for 25 years!