Ulcerative colitis / infliximab

[ncforuchelp]

I had my first infliximab infusion today for UC. Have had UC for 5 years, particularly bad flare which Prednisolone isn't touching

I feel a bit knackered but I am having (TMI!!) the worst diarrhoea of my life. It's worse than with enemas / prep drinks for colonoscopies etc.

Anyone else been here? I guess it's normal for someone with a bad bowel to have a bad bowel after being given a load of biological medicine!

Hopeful bump!

Do you have a bowel care nurse specialist attached to your consultant’s practice? I’d give them a call and they can (hopefully!) reassure. I hope it all goes well.

Are you on Facebook? There’s a group called Official IBD Support Group.

Me! I had Infliximab a few years ago and yes! It used to give me diarrhea afterwards as well for a day or two, yes, very liquid like the prep. I actually never got on with it to be honest - I've heard that it can potentially just leak out of you through your stool if you're flaring; I think that's what happened to me so it wasn't a therapeutic dose. They decided to double my frequency but I developed antibodies before they could do this and I switched meds. I know it works for lots of people though so fingers crossed for you. I'm currently flaring as well; it's a miserable illness so sending strength 😩

Thanks both. Have been trying to contact my IBD nurse since last week but nothing. They can be very good and very poor with comms. I am on that group, good idea. Just wondered if anyone had had similar.

@MudandParsnips sorry to hear you're in the same boat. This flare has lasted around 3 months and I am done!! Prednisolone has done nothing, and my ulceration now goes up nearly 40 inches. My calprotectin was 8000 2 weeks ago and I'm going back to work after Mat leave in 3 weeks so need to be better!!!

That sounds so horrendous - I really hope it works for you. Have you had IV steroids at the hospital? Sounds like you might need it? I was diagnosed at the end of my mat leave and had to take some time off to get things under control. I was really worried about it, but glad I did, so I would put yourself first, don't worry if you need to extend your leave to get healthy. Good luck 💕

I was diagnosed at the end of my Mat leave with my eldest! I've extended my Mat leave as long as we can afford to, I'm not unpaid so need to go back, don't have a choice. Flare needs to do one! No IV steroids, consultant wanted to admit me when I had my colonoscopy a couple of weeks ago but we agreed to try the treatment. No date for azathioprine yet, so have started infliximab by itself!

*now unpaid!

Hopefully they can sort you Aza soon and keeping everything crossed the Infliximab works. It's so hard working with this illness and also having to look after kids 😑 If you don't respond, make sure you care team know so they can escalate quickly. I'm on a medication called Upadacitinib now which worked miracles when on the 45mg dose (first remission in years 🎉) but stopped working on the lower dose, so waiting to go back up and really hoping it works. Are there any reasonable adjustments your employer can make to ease you back in or to make things easier for you?

First remission in years sounds tough, I really hope things improve for you soon. I work mainly from home which is great but with some unavoidable travel, and the angst that goes into planning how / when I can find a loo at short notice makes the symptoms even worse!! I flared when pregnant but this flare is the worst I've ever had and I'm bored of living in the loo!!

If the infliximab doesn't suit you then don't panic, there are other options.

I had a bad reaction to it at my 3rd infusion. I'm now getting on well with adalimumab (humira) which I inject myself at home (really easy, doesn't hurt).

Wishing you health and healing.

Azathioprine was a life saver for me. I take 200mg a day and have done for over 20 years. I was going up to 50 times a day before. They have tried multiple times to get me to stop them but I am very reluctant.

Thank you all, for sharing. 50 times a day is horrendous.

I'm hopeful if I can get through the 3 hospital infusions then I can take the injection myself.

It's such a bastard, UC, isn't it!

I'm on Infliximab but have had skin reactions to it from the start. I have dry itchy skin everywhere. They have referred me to a dermatologist but that will take a while.
Has anybody else suffered with this - my itchy feet and ankles is driving me potty.
I became so poorly last year that I can't bear to back there so reluctant to stop the Infliximab as it is working so well for my bowels.

I take strong antihistimines and various creams. Any other advice?

Thanks