Infliximab?

[LetMeJustCheckMyCitrusPocket]

Has anyone or anyone's DC had Infliximab treatment for Crohn's?

My DS has his first infusion coming up and I'm feeling apprehensive.

Any advice or information would be most welcome. I've read up on it and the pros/cons but am interested in people's own experiences too.

Thank you 🙂

I haven't got experience of infliximab but DS had adalumimab and now retuximab for UC, they are both self administered injections. His life has been changed dramatically. He was ill from about 15 yo and on masses of medication including intermittent steroids. We then had the Covid pandemic and as he was so unwell he had to shield.He started adalumimab which initially helped but unfortunately he formed antibodies and became very Ill requiring a hospital stay and postponing his end of year exams due to a concurrent virus. He has now been on retuximab for over a year and symptom free. He hasn't been well like this for about 6 years, no obvious negatives and he is on very little other medication .Fingers crossed that he can remain well and come off next year. He lived in a state of exhaustion previously and became unfit and missed out on so much teenaged life but is now making up for it🤣. We have seen the best and worst of these drugs on a way. Of course there are some serious side effects but what option do these young people have? Best of luck to you and your DS.

DS has been on infliximab and now adalumimab for Crohns. Infusions are fairly straightforward, but lots of waiting round so bring snacks, books and any portable entertainment.
DS has been very ill and needed an emergency bowel resection due to under treated Crohns. Biologics have kept him well and healthy since then.

@yikesanotherbooboo that sounds so difficult for you dealing with everything over the pandemic and your DS missing out on being a teenager. My DS is 15 and just diagnosed so I am worried about that side of things too. That's great that your DS seems to have stabilised on his current meds and I hope that continues for him.

@turkeyboots I'm so sorry to hear how ill your DS has been but really positive and encouraging that biologics have worked well for him and I hope that carries on. It's all such a constant worry and with my DS's quite recent diagnosis it feels like we're just starting on an unknown journey.

I was on it for 5 years and it was like magic, I was so well on it. Unfortunately it stopped working for me (not uncommon apparently) so now finding another immunosuppressant. Fingers crossed it works brilliantly for your son. Only downside was that infusion appointments always take much longer than you think they will each time, so always take plenty to watch or read. It is an expensive drug for the NHS but was worth every penny for me.

@Shortbreadbuyer so sorry to hear it stopped working for you. I'm really worried about that aspect too, that there's always that question mark about not only if it'll work but for how long and as you say, that's not uncommon. I hope other meds you try are successful for you too.

Son been on it since the end of last year and haven’t seen any side effects. Always good to remind yourself when faced with the scary things that our kids have to go through - not having their Crohn’s under control is worse for them than any of the side effects. (But it is hard). Good support on Facebook group - UK parents of kids with IBD. (Worth being on Facebook just for this). Always good to know you aren’t the only one in this position as it can feel lonely.

Thankyou @LetMeJustCheckMyCitrusPocket

@Zebee that's so true about reminding myself that the alternatives to these meds and potential side effects are the very real effects of uncontrolled illness. Thank you for underlining that for me, much needed! I've joined that Facebook page for parents already and it's been so useful to dip into if also quite scary at the same time. Hope your son continues to do well.

Not on it but I'm on a different mab (biologic)
I can say I have no side effects at all and the info made it sound like I was going to keel over!

I'm on another drug which is meant to have many less side effects but makes me violently ill, so it really depends

Have you joined the Crohn's & Colitis UK Forum on Facebook? It's really useful.
I have been diagnosed with Crohn's myself this year, never got the infliximab infusion i was planned to have as I had a reaction to a similar drug a week before so that ruled out infliximab. However I read generally good things about it on the Forum.
I'm now on adalimumab which I'm finding ok so far.
I do think (from my own experience & reading about others) that it can take a while to find a treatment that suits you.

In general, biologics are well tolerated and have a very few side effects. There will always be the odd story but it's pretty rare. They have been an absolute game changer in terms of treatment. There are also a number of options so if one isn't working or becomes less effective, you can try a different one and there are new medications and research coming out relatively frequently.

@PeloAddict yep reading the potential side effects is absolutely terrifying and also the chances of success/failure on top of that. Just have to keep our fingers crossed and trust that the doctors know what they're doing! Hope that your current biologic keeps being effective especially if having to put up with side effects elsewhere.

Honestly (it's for a different condition) they said my medication is black box in America, I had to be monitored for 2hrs after it, high risk of anaphylactic reaction at any time, the lot

I grabbed my last injection off the delivery guy, injected and carried on at work

@pudseypie I'll look into joining that forum too, thanks for the tip. Sorry to hear about your recent diagnosis too and hope you get on okay with the adalimumab

@mynameiscalypso that's really encouraging info to read and I will make myself re-read it when I'm having a wobble, thank you so much.

@PeloAddict I wish mumsnet had a like button for your post! Fantastic.

Was on Infliximab which was a game changer for my Crohns. Was moved to Adalimumab as it is cheaper and easier all round (self injected - I have the Amgevita version which has been even easier than the original Humira) and it has kept me largely symptom free for 7 years, after 3 resections and a temporary stoma for a year.

Biologics are the gold standard treatment I understand and apart from spending the day hanging round the hospital, they've been very easy. Ds was like a new boy when it kicked in, out playing with friends and loving school again.
But can't stress enough about bringing entertainment and chargers! Your DS is older than mine and we brought his favourite pillow and cuddly toy too as getting the cannula in wasn't easy for him initially.
DS also on Amgevita now and i don't miss the trip to the hospital, but I do miss the monthly check up from the GI team which was very reassuring.
Good luck with it!

@DotBall that's really encouraging to read as sounds like you've had a lot to contend with. Glad for you that it's helped you so much.

@turkeyboots thank you for the advice! Will certainly go prepared with various devices, books etc, for both of us! My DS has unfortunately developed a thing about needles, which he was always fine with previously, so will make sure to get some numbing cream for the cannula.

My teenage daughter hasn't got crohn's but does have Infliximab for her condition. She was on Adalimumab and methotrexate, but stopped tolerating that (needle phobia) and so has moved over to daily tablets and monthly infusions.

To be honest, it's absolutely fine. Definitely take lots to do and food. To start with, they put the infusion in slowly (takes about 4 hours) and then you have to stay in for observation for two hours. At the start you have them frequently (two weeks, four weeks etc) after a few sessions, you can have them more quickly, it then only takes two hours instead of four, but again two hours wait...

The only thing I would say is that it makes my daughter very tired and she does come home and sleep after the infusions. It costs a fortune in lunches (dd likes to have a Costa as her treat) and car parking, but that's the worst of it.

I don't know if you have access to a psychologist through your hospital clinic, my daughter does and her psychologist was a miracle worker with her needle phobia. Worth getting on top of, before it gets too out of hand imho.

The nursing team are well used to kids having issues with cannula, just let them know and they'll be very helpful. Get him to drink well on route and keep him warm, makes the veins easier to get first time.

Related to that is DS should wear a short sleeve tshirt with a hoodie as one arm will need to be exposed for the drip. We've had hot wards and cold ones, so go with layers for all possibilities for both of you.

@herbiegoes that's all really useful info too, thank you so much, especially about how long it might take as I was wondering about that. I'll definitely find out about any psychologist access too, we've not heard anything about that kind of support at all but would be worth trying as unfortunately there's going to be lots of needles ahead for him.

@turkeyboots I'd forgotten the keeping hydrated and warm advice for best veins, thanks for that reminder. It's usually very hot in the day care unit so will remind him of layers too. Hope your DS continues to stay well.