Remission: now what?

[Grumbletum]

After 3 infusions, and feeling brilliant since No 2, a colonoscopy has confirmed that I'm in remission. Now I may be mistaken and a bit befuddled by sedation, but I'm pretty sure my GI who was doing the scope said I didn't need any more Infliximab.
Has anyone else been in this position?

 

[Trysha]

Hi Grumbletum
congratulations on the remission.
I have not been treated with Infliximab so I could not be sure. There will be others on the forum who have been and I am sure they will soon be along to advise you.
I don't think your GI will stop treatment yet especially with your history but further down the road may make a change to therapy, it remains to be seen and something you need to discuss with the GI.
Hugs and best wishes
Trysha

 

[Crohn's 35]

That is great that your Crohn's could be in long term remission! I agree with Trysha, Crohn's has no cure so you should be on something so it doesn't flare back. Unless you are planning on being on the SCD diet which many say it is hard, that could your journey. For what ever it is worth, enjoy the ride!

 

[Grumbletum]

I'm still on the Aza, Pen, so hopefully that will keep the Crohns monster at bay I'm just curious to see if others here have had the Infliximab stopped after 3 infusions. We've been discussing it on another thread as it seems it might be current practice in the UK.

 

[Crohn's 35]

Well I had been on it for 3 months and stopped because of a bad reaction but they say the 3 month mark is knowing it will work or not.

Are you pain free? Or at that very least symptom free?

 

[Grumbletum]

I have a little niggle on the right which we think is from a small stricture he saw on the scope. Other than that, no active disease and I feel really well.

 

[chrisnsteph1022]

I've had two infusions and feel great. I will not stop taking it until it stops working or I become allergic to it. I'm in the US, though, so maybe the philosophy is different here.

 

[littlemissh]

Just copied this from the British Society of Gastroenterology guidelines which have been written since NICE produced guidance -

'Infliximab or adalimumab should be given as a planned course of treatment until treatment failure (including the need for surgery), or until 12 months after the start of treatment, whichever is shorter.
People should then have their disease reassessed (see 1.4) to determine whether ongoing treatment is still clinically appropriate.

1.4 Treatment with infliximab or adalimumab (see 1.1 and 1.3) should only be continued if there is clear evidence of ongoing active disease as determined by clinical symptoms, biological markers and investigation, including endoscopy if necessary. Specialists should discuss the risks and benefits of continued treatment with patients and consider a trial withdrawal from treatment for all patients who are in stable clinical remission. People who continue treatment with infliximab or adalimumab should have their disease reassessed at least every 12 months to determine whether ongoing treatment is still clinically appropriate. People whose disease relapses after treatment is stopped should have the option to start treatment again.'

So you could have had 12 months - by then they will have probably amended the guidance as it seems that not stopping and starting is being shown in longer term trials to be less effective.

 

[littlemissh]

I note it says that specialists should discus risks and benefits of continued treatment.....and CONSIDER a trial withdrawal for patients in stable clinical remission
I think I shall consider it and decide not to!!

 

[Grumbletum]

Thanks for that Yes, I wonder too what constitutes 'Stable clinical remission'?

 

[moogie]

It strange that they do not says that when you stop remi youn can rearely start it up again.

So if you stop and it fails you are screwed.

Maybe this is an old statement?

 

[Grumbletum]

No, Moogie, it's not old. I had a discussion with my IBD nurse when I had the last infusion. He said that if I had a clear scope, they would then have to weigh up the pros and cons of staying on and coming off i.e. possible side effects of being on it long term v. possible reaction to starting again at a later date. I get the feeling he would have preferred me to be on it for longer, but it's not his call.

 

[BillthePill]

Maybe the GI wasn't referring to stopping the medication but rather that there is no need to increase the dose and or shorten the time between dosages... just a thought.

Congrats on the Remission!

 

[SarahAnne]

At my last GI appointment, my doc told me he would do a colonoscopy in October (year anniversary of resection surgery). He said based on that scope, and how well I do in between then, he might consider taking me off Remicade.

I didn't ask why at the time, it seems to me why mess with something if it's working, but maybe he has a really good reason. I'm definitely going to discuss it with him further before I just go off something that is helping me.