What to do?
Double Down - 100.0% - 1 votes
Slow Down - 0.0% - 0 votes
Do BOTH! - 0.0% - 0 votes
Madcat25
Veteran Member
Joined : Oct 2012
Posts : 1116
Posted 11/25/2012 11:31 PM (GMT 0)
So after beginning my pred taper (5 mg per week) I am in a dilemma. My GI mentioned that if I got worse or for other reason I can't recall he would "double" my next infusion dose of Remicade. Also I believe he mentioned to keep up the prednisone taper even if I got worse (though not too sure if he did mean it that way).
I was on 40 mg of prednisone for at least 2 months and have had 2 Remicade infusions. I believe the Remicade is helping me but is working fairly slowly. As for the prednisone I have had increase in BM's and blood in the first day of a tapered dose, also some left sided pain. After the first day it gets better though and more or less back to my current flary-like normal. From what I feel I don't think tapering as fast as he said will end well and eventually I need to slow down.
Any thoughts what I should be doing. Double the Remicade or slow down the prednisone? Maybe both? My current thoughts are to double down the Remicade and see what it does before changing the prednisone. My infusion is 5 days and I see my GI right after that.
Refer to https://www.healingwell.com/community/default.aspx?f=38&m=2562087 for more info on my normal.
Posted 11/26/2012 1:35 AM (GMT 0)
Tough choice. I am not sure it's necessary to increase the remicade dose at this point. You've only had 2 infusions? Some people don't see results until after the 3rd or 4th infusion... about tapering pred, I can see going either way, there is some truth to the fact that you should try to get off it ASAP but I know in my own case, if I had rushed, I wouldn't have gotten off without having a relapse. I ended up using 6mp to finally taper off pred and it worked well for me. It wasn't without a lot of trial and error, testing and dose adjustments but it worked!! Have you tried 6mp or Aza? How long have you been on pred? 40mg for 2 months is hefty. Even if you taper 5mg a week starting tomorrow, you're looking at another few months on pred and it gets harder to taper as the dose gets lower (for many people who struggle with staying in remission). I am just worried about you being on the evil substance too long. Some people don't see results with 40mg and have to start higher to nip a flare. Have you considered any other treatments? Antibiotics?
Madcat25
Veteran Member
Joined : Oct 2012
Posts : 1116
Posted 11/26/2012 3:54 AM (GMT 0)
Not sure why my sig didnt show up.... But I am on 50 mg aza and have only been on it 1.5months. I dont know if its helping or if it has even began to work yet. Basically right now testing the Remicade while getting off the pred which is only half working atm.