Immunosuppressants - Crohn’s

[freddiethegreat]

My teenage son is about to start immunosuppressants to try & control the allergic reactions he keeps getting - increasing severity - to the infliximab with which he is infused 8 weekly. I am feeling a bit nervous now & not very well informed re risks etc. Anyone got any advice or experience to share?

Hi, are you sure you've got that the right way? Infliximab in itself is an immunosuppressant as are most medicines that are used for autoimmune diseases.
I've been on infliximab, never any allergic reactions though.

My 21yr old dc had first dose of infliximab last week, it is an immunosuppressant. There are others, trying to find my own way through this confusing world, so can’t really offer much advice, my dc hasn’t been diagnosed a year yet.

Hope you find some answers in here

www.crohnsandcolitis.org.uk/about-crohns-and-colitis/treatments

There are quite a few biologic meds for Crohn's and UC now. They start with infliximab because it's one of the oldest/cheapest and generally well tolerated. If he's had a bad reaction to encourage his doctor to try one of the others.

I have UC and am in substantial remission on Entyvio. It's been a godsend. It's also crazy expensive.

I've been taking infliximab since 2016 and was recently taken off it as I've become anaemic and developed skin lesions.
It has totally controlled my symptoms and stopped me being dependent on steroids so I hope this will continue even though I've had to stop treatment.
Is he being given steroids or hydrocortisone to reduce side effects from infliximab, or are they replacing infliximab with another biologic? There are several drugs ending in -mab which do the same job but have different side effects, they are all similar and act to suppress the immune system but some people tolerate some of these and not others.

Azathioprine (immunosuppressants taken as tablets) help the body to tolerate biologics (immunosuppressants given as infusions or injections).

But they takes several months to become effective.

It is normal to take both medicines.

All they can do is to keep trying different medications to see if they can find something he doesn't have an allergic reaction to. Should they not surgery will be the only answer however that's probably a couple of years down the line. All you can do is wait it out I'm afraid.

Quick update here. Started Azathioprine early March. Rushed to hospital on 16th March with pancreatitis (side effect of Azathioprine). Azathioprine stopped (obviously), infliximab no longer an option because of allergic reactions. Trying Stellara now - first infusion this week, then going over to injections. Fingers crossed again!

Oh Freddie. Do hope it works!

Stellara infusion went in with no reaction at all! So that’s one positive anyway. Fingers crossed for the injections (no contact to book in yet, which is strange).

Fingers crossed indeed!

Has he been tested for mast cell?