Should I start taking Infliximab despite being in remission?

[stephen_dryden]

Hello everybody,

Before I get onto the title of my post, I'll share a bit of my background.

I'm 27 and live in the North East of England. I was diagnosed with Crohn's disease when I was 11 years old. It took a while to diagnose as the only symptoms I had were stomach pains and weight loss. I was put on a course of steroids which kept me in remission for 3 years. The next flare up lead to a section of small intestine being removed at age 14. Following that operation I have been taking 75mg of Azathioprine daily.

At 19 my consultant suggested reducing my Azathioprine dose to 50mg. I did this, but 3 months later had a flare up. Another course of steroids and upping my Azathioprine back to 75mg followed.

At 21 I was having some issues with my stomach but this was determined to be caused by narrowing following the last flare up. I went on a liquid diet for a few months and modified my diet and have generally managed to live a 'normal' life.

Very occasionally I will have a blockage which causes pain, bloating and sickness but I'm generally over that in a day or two. Earlier this year I had several instances of blockage close together which was worrying but tests just reconfirmed the narrowing. The only test that caused concern was a high calprotectin value, but as I showed no further symptoms and the blockages stopped, no further action was taken. These blockages occurred around the anniversary of my fathers death and I suspect they are linked with anxiety. I have now been fine for several months.

At a recent review with my consultant, he had said he had reviewed my case with other experts and they had suggested I consider taking Infliximab. This came totally out of the blue to me. I was told to go away and research it and come back in 7 weeks.

From the research I have carried out so far, I cannot understand why this is being suggested to me. I understand I risk side effects, the medication loses it's effectiveness over time, and once I start taking it, it can be risky to stop and is less effective I was to ever stop/start again.

I'd be grateful to hear if anybody has been in a similar position to me. I'd also love to hear anyone's thoughts on my situation and any questions I should ask the next time I see my consultant.

 

[DJW]

Hi and welcome.

Being diagnosed at a younger age tend to have a more aggressive disease course. Going on Remicade would help to ensure lasting remission.

I was put on Remicade a year ago because surgery is no longer an option. It took care of a bad flare I'd had for as few years. I wish it was an option when I was first diagnosed.

Serious side effects are very very rare.

I'm no doctor; I agree with the doctor. It really is a life saver for a lot of people

 

[Clash]

If the narrowing they found was scar tissue then no med will fix that. Scar tissue though would not cause a high calprotectin result so there may be inflammation involved in the narrowing or at some other location, which would mean you aren't in remission.

The type of remission is also important. Most GIs are working toward you achieving deep stable remission which is clinical, endoscopic and histological which promotes full mucosal healing. Lack of symptoms(clinical remission) doesn't mean that active disease isn't present.

Maybe follow up with the fecal calprotectin test and share your concerns with your GI.

 

[Honey]

Hi there and welcome,
I am in the same position as you after being in remission for almost two years. I reacted to the meds you mentioned so eventually had to agree to going on Infliximab infusions. I was almost a year on that until I had to stop as I ended up in hospital with a lung infection. I said no to going back to that and have remained well, on steroids. However, my last Calprotectin test was very high, over a 1000, so I have to consider going back on. They look at your bloods too and can tell I believe if something is going on re Inflammatory levels. I am well too and do not wish to go back on that. I shall have to discuss this with my Consultant next month. It is a hard one ,isn't it? Let me know how you get on. Best wishes.

 

[stephen_dryden]

Hi everyone - thanks for your replies.

My last calprotectin result was ~350, which does suggest inflammation but as that was the only indicating factor, initially my GI did not show concern. I also had a colonoscopy and MRI scan, neither of which showed inflammation. They just showed narrowing caused by scar tissue.

I've since had another calprotectin test but I'm still waiting for the results. Fingers crossed it has come down. I generally feel well which just makes this decision feel impossible. I've been fine on Azathioprine for such a long time now I feel very reluctant to 'rock the boat', especially as taking this medication won't make me 'feel' any better.

I see my GI in 5-6 weeks. Will let you know what happens next.

Thanks again,

Stephen