HealingWell
Search Close Search
☰

Inflectra not working?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/7/2021 1:18 PM (GMT -5)
Well I was feeling great but I’m about 3 weeks away from my 4th infusion and as of today I’m having cramping and seeing a small amount of blood. No other symptoms yet. This is very discouraging and disappointing.
Posted 12/7/2021 1:43 PM (GMT -5)
I wouldn't be quick to assume the Inflectra isn't working. You posted yesterday you were having some cramping since tapering off Budesonide. If you are not on any rectal meds I would call the drs office & speak with the nurse, she can talk to your dr. about this.

Hang in there.
Posted 12/7/2021 3:19 PM (GMT -5)
I have tons of Rowasa enemas still that I used for a long time. They just weren’t working at all anymore, is there a chance they’ll work now?
Posted 12/7/2021 5:44 PM (GMT -5)
Absolutely! Sometimes the inflammation is more than the Rowasa alone can tackle but with a secondary med it may be able to help tamp down the inflammation. I would give it a try, worst case it does nothing, best case it makes a difference.
Posted 12/7/2021 5:53 PM (GMT -5)
It might be an idea to get your inflectra trough levels measured right before your next infusion (this is a blood test). This can give an idea if you might benefit from an adjustment in dose or frequency of the inflectra.
Posted 12/7/2021 6:13 PM (GMT -5)
Do I need to ask for this test or is something they routinely do during maintenance doses?
Posted 12/7/2021 7:07 PM (GMT -5)
I think you'd need to ask/discuss with your doctor. If inflectra is working then there's no need to do the test. My dr ordered one for me because I flared (badly) between my 3rd and 4th infusions while weaning off prednisone. However I was so weak by the time I got to the infusion -where they also did the blood test- that they already gave me a double dose (10mg/kg) immediately.
Posted 12/7/2021 7:15 PM (GMT -5)
Are you still on the medication? Were you able to get out of the flare and continue using?
Posted 12/7/2021 7:58 PM (GMT -5)
No I did 2 infusions on 10mg/kg, which helped a bit, but i still had a lot of symptoms, so I then switched to entyvio. The blood test established that i didn't have antibodies and that it was worth attempting the double dose.
Posted 12/7/2021 8:23 PM (GMT -5)
Good to know. I’ll definitely ask about the test.
Posted 12/8/2021 7:00 AM (GMT -5)
I agree -- get your levels checked. Talk with your doc. There are several dose and frequency changes that can be made. See my sig. It took me a long time and lots of adjustments but I am finally in full remission confirmed by colonoscopy and biopsies. When I had the test to check my levels recently I have high levels in my system and my doc is happy. He said levels that high should prevent any antibody formation.
Posted 12/8/2021 9:17 AM (GMT -5)
CCinPA : your post makes me feel a lot better! I will definitely ask about the testing. I’m going to be calling my GI today. I’m going on vacation this Friday so that’s why this all has me pretty stressed out as well.
Posted 12/8/2021 11:05 PM (GMT -5)
4th infusion means your first 8 week stretch between infusions doesn’t it? Not on remicade/inflected but entyvio had the same dosing schedule. I remember that first 8 week stretch was a little tough. Even after that for a few months especially about a week before my infusion. I’d go back on rectals and see if that helps.
Posted 12/9/2021 12:42 PM (GMT -5)

HaleyA said...
Do I need to ask for this test or is something they routinely do during maintenance doses?

No, they don't routinely do it. Tell your doctor you're seeing blood again and if they're a decent doctor, they'll order the trough levels and antibodies test (it's one blood test that measures both). Remicade only worked for me for about 9 weeks, then I developed antibodies and went into a very bad flare.
Posted 12/10/2021 7:42 AM (GMT -5)
My doctor put me back on budesonide and said we’ll check my levels when I get back from vacation. I’m currently in the airport cramping with blood. Ugh I just really hate this
Posted 12/10/2021 11:30 AM (GMT -5)
Hopefully the budesonide will kick in soon so you can enjoy your holiday. It sounds like you're in good hands with your doctor.
Posted 12/11/2021 12:18 PM (GMT -5)
Budesonide seems to be kicking in now thanks goodness. It was not a fun day in the airport and on the airplane yesterday but I made it.
Posted 1/3/2022 8:55 AM (GMT -5)

FlowersGal said...
4th infusion means your first 8 week stretch between infusions doesn’t it? Not on remicade/inflected but entyvio had the same dosing schedule. I remember that first 8 week stretch was a little tough. Even after that for a few months especially about a week before my infusion. I’d go back on rectals and see if that helps.

Hmmm. So then you got the 8 week infusion and you went back into remission?

I’m a week away from my first 8 week infusion with Inflectra, and I am struggling a bit.
Posted 1/3/2022 10:08 PM (GMT -5)
Wasn’t in remission quite yet but had been improving. Backslid a little before the infusion but yes got better after. Sorry, a lot of details are a bit muddy now after 4 years but that’s my recollection. That process repeated a few more times until I was in total remission. I don’t recall I ever bled though , just crampy and urgency but nothing like before.
Posted 1/4/2022 1:34 PM (GMT -5)
Rusty -- talk to your doc before your next infusion so you can get your levels checked. Even if the levels are ok, you can still increase frequency and or dose. Since you are having symptoms before the 8 weeks, it might make sense just to go to every 6 weeks as a first step.
✚ New Topic ✚ Reply