Double dose remicade

[Suzie]

Has anyone else been on a double dose of remicade (10kg per kg) and then switched back to the single dose ? I've been on a dbl dose for almost 5 years now and it seems to be keeping me well. Im thinking of moving from USA to Ireland for a couple of years (that's where family is), and doctors there seem very reluctant to give any more than the single dose. I'm worried that having less remicade in my system will give my body more of a chance to develop antibodies and I'll end up having a reaction and having to come off it. (thats what my doc in America says) .This medicine has been great for me and I'd hate that to happen.
Any thoughts greatly appreciated!
Thanks!

 

[SdN]

I've only taken 3 doses so far and only at 5mg/kg so I'm not sure what might happen to you in the transition you described. Why are the doctors hesitant to give you the 10mg ratio? Is it because it's twice as expensive or do they have medical concerns? If you've been symptom free on 10mg/kg and they want to see if you stay that way with a lower dose I would think it would be better to gradually transition you down to 7.5mg/kg first. Just my two cents,

 

[Suzie]

Yes, I agree with you about coming down to a lower dose slowly, rather than going from 10mg straight down to 5mg. That's also what my doctor here in America has suggested, ( i.e. if the Irish doctor insists on lowering the dose.) I'm guessing it's mainly a cost issue that has the Irish doctor reluctant to keep me on the higher dose.....although he did say to me "that's an awful lot of medicine for you to be on". ( not sure what he meant by that). And when I spoke to a nurse during one of my infusions (although this was 2 years ago, so might be different now) she said they only had one other patient in the hospital on a double dose, and he was a " big guy", whatever that means! She looked at me (120 lbs) and was stunned I'd be getting such a large dose! So it seems it's definitely not the norm in Europe to be on a double dose.....obviously very different to USA practice. So I'm just curious if anyone else in Europe, particularly Ireland has ever been on this 10mg / kg dose......maybe I've no hope of staying on it over there?