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Urgency starting 4 months in on Remicade😒😒

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Posted 3/10/2022 8:20 AM (GMT 0)
Hey guys,
I hope everyone's doing well.
I Started remicade infusions in October and now 4/5 months later I'm suffering diaharia, urgency to go to the bathroom no blood.

My current medication is remicade, 4g Pentasa granuls, 15mg methotrexate and folic acid.
Anyone else have it fail so quick on Remicade? Regularly doing anti body bloods.
what would be the next step/medication? Recitals enema maybe? Shorter infusin time.
Calling gastro tomorrow.
Life was great for 4 months
****!
Posted 3/10/2022 5:00 PM (GMT 0)
Does your doc do calprotectin testing for inflammation? Maybe also get tested for invaders. I definitely would start mesalamine enemas anyway.

q
Posted 3/10/2022 6:19 PM (GMT 0)
Hi!

Often the starting dose is not enough for people to maintain remission. Ask your Doc to get your trough levels checked (and crp/calprotectin) before your next infusion, and try and get the dose raised by your insurance company.

For example the starting dose is 5mg/kg every 8 weeks. I'm currently on 10mg/kg every 4 weeks. There's a lot of room to increase by either raising the dose or frequency with remicade.

Best of luck!
Posted 3/11/2022 11:25 AM (GMT 0)
Did this come on suddenly? If so, it's possible it's just an intestinal bug. Hopefully it will resolve on it's own. If it's been longer than 4-5 days check with your doc and get a stool test that tests for a broad spectrum of possible pathogens. Good idea to get the trough levels checked right before your next infusion. You are still in early days on remi and there is lots of room to adjust dosage and frequency. As long as the trough levels don't show high levels of antibodies you would likely benefit from a change in dosage or frequency or both even if it shows you have a good level of remicade in your system. I am not sure what blood tests you have been having but I am thinking it's probably not a test that checks antibodies and the level of medication. That is a special and expensive test and they don't to it as a regular routine test (at least that's been my experience).
Posted 3/11/2022 5:06 PM (GMT 0)
Yep. It had me in remission for only 9 weeks, then I went into a really bad flare. My levels were fine but I had developed antibodies. Remicade was a total waste of my time. I next tried Humira, then Entyvio, then Stelara--all of which did nothing. I finally tried Xeljanz, which has had me in remission for about 7 months now.
Posted 3/13/2022 10:09 AM (GMT 0)

quincy said...
Does your doc do calprotectin testing for inflammation? Maybe also get tested for invaders. I definitely would start mesalamine enemas anyway.

q

Hi,Quincy my go to man.. I appreciate your replay. My doc has ordered all tests such as stool, bloods, antibodies, ultrasound. Thanx for always replying once again.
Posted 3/13/2022 10:14 AM (GMT 0)

CCinPA said...
Did this come on suddenly? If so, it's possible it's just an intestinal bug. Hopefully it will resolve on it's own. If it's been longer than 4-5 days check with your doc and get a stool test that tests for a broad spectrum of possible pathogens. Good idea to get the trough levels checked right before your next infusion. You are still in early days on remi and there is lots of room to adjust dosage and frequency. As long as the trough levels don't show high levels of antibodies you would likely benefit from a change in dosage or frequency or both even if it shows you have a good level of remicade in your system. I am not sure what blood tests you have been having but I am thinking it's probably not a test that checks antibodies and the level of medication. That is a special and expensive test and they don't to it as a regular routine test (at least that's been my experience).

HI, darl thanx for replying im in Australia and im on the public system waiting for my insurance to kick in. The public system allows us the have antibodies test done free of charge. Everytime before my infusion i have 3 vials of bloods taken.
Posted 3/13/2022 10:16 AM (GMT 0)

UCinsouthfl said...
Hi!

Often the starting dose is not enough for people to maintain remission. Ask your Doc to get your trough levels checked (and crp/calprotectin) before your next infusion, and try and get the dose raised by your insurance company.

For example the starting dose is 5mg/kg every 8 weeks. I'm currently on 10mg/kg every 4 weeks. There's a lot of room to increase by either raising the dose or frequency with remicade.

Best of luck!

Thanx for replying Im in AUSTRALIA and its free on the public system. But i do believe thats my next step.Thanx
Posted 3/13/2022 10:17 AM (GMT 0)

Sara14 said...
Yep. It had me in remission for only 9 weeks, then I went into a really bad flare. My levels were fine but I had developed antibodies. Remicade was a total waste of my time. I next tried Humira, then Entyvio, then Stelara--all of which did nothing. I finally tried Xeljanz, which has had me in remission for about 7 months now.

Im Glad its working for you. Thanx for your reply.
Posted 3/13/2022 11:17 AM (GMT 0)

quincy said...
Does your doc do calprotectin testing for inflammation? Maybe also get tested for invaders. I definitely would start mesalamine enemas anyway.

q

Quincy can i use steriod enemas, has anyone used it with remicade before.？
Posted 3/13/2022 5:33 PM (GMT 0)
I've never been on biologics and only used steroid enemas once... but I've never seen anything here on the contraindication of using it. I've seen others on Remi who have been on pred at the same time.
Let us know your test results when you get them.

q
Posted 3/15/2022 3:29 PM (GMT 0)
Remicade had me in remission for about 4 weeks.....
Then I tried Entyvio and that has worked for about a 1.5 - 2 years.
My doctor wanted to start with Entyvio actually, but insurance required that I try/fail on remicade or humira first.
Posted 3/15/2022 5:17 PM (GMT 0)
I used steroid enemas when I first started remicade with no issues
Posted 3/15/2022 6:26 PM (GMT 0)
I'm still trying to get in remission on the higher dose of remicade, and I've been using the steroid enema's for quite a while. No issues for me..
Posted 3/16/2022 5:27 AM (GMT 0)

suttie said...
Remicade had me in remission for about 4 weeks.....
Then I tried Entyvio and that has worked for about a 1.5 - 2 years.
My doctor wanted to start with Entyvio actually, but insurance required that I try/fail on remicade or humira first.


That's me in the distance future, I'd love to go on that next. Any side effects with it? Thanx for your reply
Posted 3/16/2022 10:04 PM (GMT 0)
If you were asking about entyvio side effects — ive been in it for 5 years now. Absolutely no side effects for me and happily in a deep remission. Found complete symptomatic relief by about month 4, with many improvements in symptoms before that.
Posted 3/17/2022 5:21 AM (GMT 0)

CCinPA said...
I used steroid enemas when I first started remicade with no issues

Thanx, Doc proscribed it..
Posted 3/17/2022 5:22 AM (GMT 0)

FlowersGal said...
If you were asking about entyvio side effects — ive been in it for 5 years now. Absolutely no side effects for me and happily in a deep remission. Found complete symptomatic relief by about month 4, with many improvements in symptoms before that.

Great stuff wishing you all the best.
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