Hi I had my 8th infusion about two weeks ago and was told if I am responding to the treatment (which I am) then after the 10th one that will be the end!! I have never felt as good and am quite scared to come off, is this the norm and if so how are people feeling after finishing their infusions? thankyou
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Stopping infliximab after your 10th infusion
- Thread starter Christie
- Start date
Usually, doctors want you to stay on it as long as it is working for you. I can't imagine why they would want you to stop it if it is making you healthy!!
I took it for 6 years every 4 weeks and I didn't stop taking it until I developed allergy from it.
I would maybe talk to your doctor again or even seek a 2nd opinion! I wouldn't stop taking it if i were feeling that good from it.
I took it for 6 years every 4 weeks and I didn't stop taking it until I developed allergy from it.
I would maybe talk to your doctor again or even seek a 2nd opinion! I wouldn't stop taking it if i were feeling that good from it.
Hi Christie, I see you are in the UK. The updated uk guidelines for the use of infliximab in crohns disease can be found here:- http://www.nelm.nhs.uk/en/NeLM-Area/Evidence/Guidelines/NICE-updates-guidance-on-adalimumab-and-infliximab-for-Crohns-disease-/ this is only a summary, there is a full version, which I thought I had saved somewhere, but I can't for the life of me find it sorry, hopefully someone else can post a link or you can find it on the NICE website.
Basically once you have been on infliximab for 12 months your dr should carry out tests (colonoscopy, calprotectin test etc) to see if you are in remission or not. If you are found to be in remission then due to the NICE guidelines you have to come off infliximab. If your disease relapses after treatment is stopped you should have the option to start treatment again.
I have been on infliximab for a year now. At my infusion next Friday I have to bring a stool sample along so that they can perform the calprotectin test. If my calprotectin test shows no inflammation (or inflammation below a certain level I guess) then I will no longer be deemed suitable for infliximab and will be put onto a drug that is less expensive.
My personal view is that it is a money saving exercise, because surely if you are in remission then infliximab is working, and you should be able to stay on it until it stops working.
Did your GI say they will perform some kind of test rather than just going by the fact you are feeling well?
xx
Basically once you have been on infliximab for 12 months your dr should carry out tests (colonoscopy, calprotectin test etc) to see if you are in remission or not. If you are found to be in remission then due to the NICE guidelines you have to come off infliximab. If your disease relapses after treatment is stopped you should have the option to start treatment again.
I have been on infliximab for a year now. At my infusion next Friday I have to bring a stool sample along so that they can perform the calprotectin test. If my calprotectin test shows no inflammation (or inflammation below a certain level I guess) then I will no longer be deemed suitable for infliximab and will be put onto a drug that is less expensive.
My personal view is that it is a money saving exercise, because surely if you are in remission then infliximab is working, and you should be able to stay on it until it stops working.
Did your GI say they will perform some kind of test rather than just going by the fact you are feeling well?
xx
I'm in Scotland and I had the first three Infliximab infusions then a colonoscopy to determine progress. No signs of active inflammation, so told to continue on Azathioprine only. I wish I'd been allowed to stay on it for a bit longer, but the have to fly me to the mainland for infusions, so the added expense may have been an affective factor in the decision to take me off it.
Still feeling well, apart from a few niggles that I am monitoring carefully.
Still feeling well, apart from a few niggles that I am monitoring carefully.
thankyou very much, i was told it was because of the cost of it and that I would have a colonoscopy to see if there was active crohns and if not then I would be co ming off it!! i have been on it for roughly 14 months but missed a few because of absesses and a reversal of my ileostomy, as I say I have never felt this good in a long time, it was the nurse I spoke to so hopefully will get to see my GI the next time I am there.
Soybean, it seems some doctors in the States are adopting this policy as well, whether from pressure from the insurance companies or whatever. I've been on Remicade over a year now. My Crohn's has been in remission since my surgery in October, and at my February appointment he mentioned doing a colonoscopy a year from the surgery (Oct. 2012) and if there was still no evidence of disease activity, we would talk about going off Remicade.
He didn't mention any of this at my most recent appointment on May 29, but he did order a stool sample, to test for H. Pylori that could be causing my gastritis. I wonder if he is doing the calprotectin test as well?
My initial reaction was like most people's, why would they take me off if it's working, etc. After thinking about it though, I realized that I would prefer to be on a milder maintenance drug if it would work for me. I realize a lot of the drugs that have "failed" me in the past aren't necessarily useless drugs, they were probably just given too late to have any effect on the disease at the time.
Hopefully, for anyone coming off the Remicade, a maintenance med will keep the remi induced remission.
He didn't mention any of this at my most recent appointment on May 29, but he did order a stool sample, to test for H. Pylori that could be causing my gastritis. I wonder if he is doing the calprotectin test as well?
My initial reaction was like most people's, why would they take me off if it's working, etc. After thinking about it though, I realized that I would prefer to be on a milder maintenance drug if it would work for me. I realize a lot of the drugs that have "failed" me in the past aren't necessarily useless drugs, they were probably just given too late to have any effect on the disease at the time.
Hopefully, for anyone coming off the Remicade, a maintenance med will keep the remi induced remission.