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Flaring after my third infliximab infusion :(

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Ulcerative Colitis
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 23
Posted 2/20/2021 7:40 AM (GMT -7)
Hey everyone,

Sorry for another post I hope everyone is well.

I’m so gutted.

I have tapered to 15mg of pred for about a wwwk and today have had diarrhoea twice with a tiny bit of blood and mucus. The past few days haven’t been great. It looks like I’ve failed infliximab which I’m so sad about.

I am going to go back up on my steroids tomorrow to 20mg and hope it calms things down.

My nurse says I can try another biological drug or it may have to be surgery. It’s my birthday next week and I’m just fed up with this illness and I’ve only been diagnosed since November.

I’m sorry to rant just so frustrating.

m xx
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18325
Posted 2/20/2021 7:59 AM (GMT -7)
Sorry that you are still feeling bad. You posted about this on the 13th, I believe. If this were me, before switching to another medication, I would slow my prednisone taper down. Dropping like you have been often brings the symptoms right back. There are some great tips in your other thread about tapering.

Take care.
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 23
Posted 2/20/2021 8:14 AM (GMT -7)
Hey! Thanks oh gosh I missed that I will have a look thanks again!!
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 928
Posted 2/20/2021 8:46 AM (GMT -7)
Hi, i flared after my 3rd infusion too, while tapering pred. I'd got down to 5mg when it happened. The hospital acted like they'd never seen that before, so it took 6 weeks to convince them it was really a flare, then they did an emergency colonoscopy the next day which confirmed severe distal inflammation. So then immediately before my 4th infusion (which was still 8 weeks after the 3rd, as planned), they measured my blood levels of infliximab and gave a double dose of infliximab (i.e. 10 mg/kg rather than 5mg/kg). My blood results showed that blood levels were therapeutic and no antibodies to infliximab, so we continued for the double dose for another infusion after that, but my symptoms did not improve enough to justify continuing so I then switched to entyvio.
I chose not to increase the pred above 5mg as I'd been on it for 18 months by that point and this was the first time I'd got below 15mg without flaring. Later I found out I had severe osteoporosis from the pred so I'm glad I didn't increase it at that stage. But it's a personal choice. I opted to take the lowest dose for the maximum level of symptoms I could tolerate.
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 23
Posted 2/20/2021 9:35 AM (GMT -7)
That’s really helpful poopydoop!

They have mentioned perhaps switching me to entivyo not sure if they do one more infliximab infusion as a last ditch effort.

Are you on entivyo now???

Thanks so much for replying!! Such a nightmare trying to find something that works for you.

Thanks so much

M xx
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 928
Posted 2/20/2021 4:30 PM (GMT -7)
Hi M
I think it could be wise for them to measure your blood levels of infliximab before switching
to another drug (normally they do it just before an infusion to get the trough level) to see if you have a therapeutic level or antibodies, and if a dose increase might be helpful - that is, assuming you are having a partial response to infliximab rather than zero response.

I tried entyvio for 4 months. I managed to wean off prednisone completely, but still had severe inflammation in the rectum which left me with pain and urgency, so then I switched to xeljanz. Just had my 2 year anniversary in January, it gave me my first full remission since diagnosis 4 years before, and knock on wood it's still working.
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