which biologic? : I had a bad side... - Crohn's and Colit...

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which biologic?

15 Replies

I had a bad side effect with infliximab so now have to decide whether to continue with Entyvio or sterlara?

I have read up but anyone got any advice?

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15 Replies
Jameshuh profile image
Jameshuh

Have you been on Entyvio before?

in reply toJameshuh

No all I know is that it less systemic and targets the gut? I hope less likely to give me side effects?

Jameshuh profile image
Jameshuh in reply to

I have been on it for 8 mths only side effect that I have noticed is occasional diarrhea. I ended up in hospital at one point but not sure if I can put that down to Entyvio as other people were sick in my house. It appears to work as far as I can see and my UC symptoms have been pretty manageable.

thank you I think I am going to try it!

Jameshuh profile image
Jameshuh in reply to

I wish you luck with it and (most importantly) no IBD symptoms.

Liz191 profile image
Liz191

I had a really bad reaction to Infliximab as well. Now on Entyvio and doing really well. Symptoms are controlled, bloods all clear and no side effects other than mild fatigue when I was getting it as infusions. I was terrifird I would have a reaction and I know everyone is different but it's been literally life chanhing for me.

in reply toLiz191

Thank you 🙏 yes terrified but trying to be calm.

Customerservice profile image
Customerservice

I was on infliximab for a year, working well but then developed antibodies and had to switch to Adalimumab. Feel the same as I did on infliximab hope not developing antibodies. Get in touch with your doctor to find out whats best for you.

in reply toCustomerservice

Thank you. I don’t know what to ask. I haven’t seen my doctor most of my communication is with IBD nurses. I was admitted to hospital to get bleeding under control and started infliximab . All fine till second dose then my nerve problems began. Nervous about starting anything until my face numbness goes. I think I’ll try and get an appointment with doctor. Thank you

Customerservice profile image
Customerservice in reply to

I have to admit it's the IBD nurses I speak to, only seen the doctor when I was having a sigmoidoscopy. My IBD nurses are brilliant. Give yours a call thats what they are there for and they should be able to help.

in reply toCustomerservice

Thank you I will be speaking to them next week. Reassured by the replies here.

Liz191 profile image
Liz191 in reply to

My side effects were different, Lupus and hepatitis, but I was told to wait until the infliximab had cleared from my system before starting the Entyvio. It was a bit of a balancing act waiting long enough for the side effects to clear and not so long my symptoms flared up. I did find after a couple of months I could tell the drugs were coming out of my system as my blood work started improving and my lupus rash started to fade. It's normally the IBD nursrs I speak to as well but it was my consultant that made the call about when to start me on Entyvio. I did speak to the IBD nurses about my concerns about starting the new treatment though and it helped.

in reply toLiz191

Thank you. I am having a call with my nurse on Monday so I feel I will ask to wait until I feel I am completely over the effects of infliximab before I start entyvio. Are you getting ok with entyvio?

Liz191 profile image
Liz191 in reply to

Yeah, it's been great. My symptoms are comoletely in remission, my calprotectin level is normal and all bloods normal. No side effects except a bit of mild fatigue from the infusions and I'm doing well enough they've let me switch to injections. They kept me on the infusions a bit longer than is normal to make sure I wasn't going to have a reaction as it took 2 infusions with infliximab before I showed any signs of something going wrong. This reassured me as well that they were taking things seriously. The Entyvio infusions are shorter than the Infliximab ones and all round it's been a much better experience. Hope whatever you decide to go for works out for you as I know what a difficult position it is to be in xx

Sillysausage2 profile image
Sillysausage2

Hi, infliximab didn’t really work for me. I’m on ENTYVIO it’s working but I have itchy slightly peeling hands!

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