Hi everyone - warning - this will be long.... I want your opinion on this one. I called the GI's office twice and sent two emails and hopefully I will get an answer or an appt although this is not an urgent matter.
My son is currently reloading with remicade - due for last reloading January 28 (these reloads were closer together - 2 weeks apart) and then he will be on a 4 week cycle. Currently he is taking 3 mg (one capsule) of Entocort as well. Here is some history - when he started with remicade, he was on 2 caps (6 mg) Entocort. About 10 days after his 2nd infusion of remicade (end of October) - he dropped from 2 caps to one cap and one day later, he immediately noticed the difference with his BMs (looser and more often) - however, it seemed to get better a few days later, and then things got worse. We didn't know it at the time, but he was beginning to flare, however, his 3rd loading dose of remicade was going to happen and as soon as that happened, everything was good again.
So at this point, he is on one cap of entocort only, and now it was time to drop it and since he reacted the last time he tapered, I called the pharmacist and he advised one every other day would be a good idea this time. So this was 2 weeks after his 3rd infusion. Again, 24 hours later, L noticed BM change, nothing major, but things didn't get better, they got worse, and we kept thinking it was because his adrenals had to re-adjust, and didn't realize at the time that he was metabolising the remicade too quickly.. So we are now just over 4 weeks away from his 4th infusion (at this point he was scheduled for 8 week interval) - and symptoms were getting worse. This is went we called the GI who was in Pakistan for a month, but through his support staff, his infusion was moved 3 weeks earlier, and the blood test revealed hardly any remicade in his blood.
Let me point out that the GI ordered him to go back on full dose of entocort just before he went in for that emergency infusion, however, we told him that L never did well with the full dose (3 caps) - and basically L went back to only one cap instead of one every other day.
So now he has reloaded a few more times, going in on January 28 - and not sure if he should taper off that last capsule of Entcort. Things are going so well at this time. I will try contacting GI again but thought I would ask you guys.
He has been on Entocort for 4 1/2 months total - one cap for the last two months. My thoughts are since he has infusion on January 28, perhaps taper to one ever other day a week before that infusion, or should I just wait for GI's instructions. He never did say how long to continue taking it. Am I worrying too much - will a few weeks more of one cap daily really be that harmful? I really don't want a repeat of what happened last time. Should we wait for his first 4 week cycle (7 weeks away) - when he gets blood test to see how much remi is in his blood? I would assume the GI would have instructed us by then.
What are your thoughts? Again, L is doing great right now. I will call GI later today - they seem to be lax in getting back and that is frustrating!:rof: