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Increased Infliximab

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Posted 7/1/2023 9:17 PM (GMT 0)
Anyone who has flared on infliximab and then had their dose increased:

- Did it work?
- How long before you noticed a difference?
Posted 7/2/2023 2:18 AM (GMT 0)
First the GI tested my trough level and my antibody levels. If I had antibodies we used methotrexate to drive them down (doesn't work for everyone) and we raised my Remicade from 5 to 7.5. We did it another time and raised it to 10.
My GI raises and lowers depending on symptoms and levels.

When we raise my Remicade level I can usually tell right after that infusion....at least alittle. It seems to last longer, my symptoms aren't as bad...and usually it helps even more the next time. By the 3rd infusion I'm usually good.
Posted 7/2/2023 4:34 AM (GMT 0)
Thanks for the reply clo2014.

They've checked my levels but i haven't heard anything back- I'm guessing they're okay.

It's only been a couple of days for me but still getting blood. Was feeling pretty low that it doesn't seem to have worked, but there's still some hope there. Maybe it will take another couple at an increased dose....
Posted 7/2/2023 11:34 AM (GMT 0)
I was put on a double dose of infliximab (10mg/kg) after flaring on the standard dose. They only took the blood sample to check my blood levels 5 minutes before administering the higher dose infusion because I was in a bad shape and they didn't want to prolong my suffering. It did help me but it still wasn't sufficient to put me in remission... i think i would have needed more like 5x the standard dose for that to happen...

As for how quickly it worked... i noticed an improvement almost immediately.

Fwiw my blood levels were within therapeutic range. The test took a while for the results because they had to send it off to a specialised lab as it's not a common test.

Post Edited (poopydoop) : 7/2/2023 3:38:32 AM (GMT-8)

Posted 7/2/2023 12:33 PM (GMT 0)
Thanks poopydoop. I think i am in the same boat as you with Infliximab. Entyvio didn't work either.

How long did you stay on with 10mg of Infliximab before trying something else?
Posted 7/2/2023 1:52 PM (GMT 0)
I think we did 2 infusions at that dose (so ~4 months) before switching to entyvio, which was slightly better but still not good enough.. then I switched to xeljanz which finally put me in remission.
Posted 7/5/2023 8:50 PM (GMT 0)
I didn't flare on remicade, but it took me a long time to reach full remission -- see my sig below. I was in a severe flare when I started it and saw improvement, but never quite reached full remission until we maxed out at 10 mg/4 weeks
Posted 7/5/2023 8:58 PM (GMT 0)
Hi CCinPA. Did it take a few doses at 10mg every 4 weeks? I had my first 10mg dose last week but still not got things under control. Hoping it will just take a bit longer
Posted 7/5/2023 9:08 PM (GMT 0)
I think it was after my 2nd 4-wk dose that I knew I was finally in remission. Have you seen any improvement at all? Are you getting 10 mg every 4 weeks?
Posted 7/5/2023 9:17 PM (GMT 0)
Slight improvement. It's hard to tell really as I'm not really eating much but when i do go there's still a lot of blood and watery diarrhoea 🤮

I'm every 4 weeks going forward. Fingers crossed the next dose will get me into remission
Posted 7/6/2023 2:05 AM (GMT 0)
How long have you been on remi and were you in complete remission before this flare? Are you using any rectal meds? If not, ask for some hydrocortisione enemas to help keep you functional. If you don't start seeing improvement soon remi may not work. You might want to start thinking about what to do next if you have to switch to another med.
Posted 7/6/2023 3:47 AM (GMT 0)
I hope you start feeling better soon.
Posted 7/6/2023 4:32 AM (GMT 0)
I've been on remi for about 8 months. Before that I was on Entyvio. Both seem to have worked for around 7/8 months.

A major stress caused the last flare which made me switch from entyvio to remi. Not sure what caused this flare though.

I have Budesonide enemas which I've been using too.

I think the plan is sterlera next then jak inhibitors if that doesn't work but the jak inhibitors sound very scary
Posted 7/6/2023 11:23 PM (GMT 0)
I was scared of Xeljanz too, but they're really not any riskier than the biologics (that's what multiple IBD specialists told me). I haven't had any side effects at all.
Posted 7/7/2023 9:27 PM (GMT 0)
If I had to choose between Stelera and a jak inhibitor I would choose the jak inhibitor because I have seen more success stories with those than I have Stelera on this forum. No one knows how we will respond to any of these meds though so do you research and talk with your doc so you are comfortable with whatever you choose.

Hoping the higher dose of remi kicks in and you won't have to change.
Posted 7/8/2023 11:19 AM (GMT 0)
Most of the data on the safety of jak inhibitors comes from rheumatoid arthritis patients aged over 50 who have a different set of co-morbidities than the average IBD patient. This makes it difficult to assess the risk for ibd patients. Additionally, most adverse events were in patients taking higher doses of the jak inhibitors which are generally only used for a few months during the induction phase in ibd patients.

I seem to recall stelara has a higher success rate in crohns patients than colitis patients but not sure where I picked that up from.
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