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Allergic Reaction - Remicade

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Ulcerative Colitis
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Posted 1/25/2020 1:47 AM (GMT 0)
On January 20th I went in for my 4th Remicade infusion, my first dose after my loading doses. 15 minutes in I started having trouble breathing, started getting flushed on my chest/arms and then a few hives started appearing. The nurse gave me IV Benadryl, an IV steroid and Claritin. The reaction subsided quickly but my infusion wasn’t started back up.

I’m starting to become quite sick as I’m still waiting for my next infusion. Has anyone else experienced this so early into your Remicade journey? I’m supposed to get premeds during my next infusion and be dosed over 3-4 hours vs 2.

Thanks in advance!

Post Edited (smw) : 1/24/2020 6:55:09 PM (GMT-7)

Posted 1/25/2020 7:33 AM (GMT 0)
You almost certainly have antibodies to Remicade and that's why you experienced anaphylaxis. This is very common. You should not have another dose until they have tested you for antibodies. If you have a high amount of antibodies, you will need to switch to another drug as not only could it kill you, but the Remicade is rendered useless and would not treat your UC.
Posted 1/25/2020 12:46 PM (GMT 0)
I was afraid that was what was happening. I got my blood drawn but my results won’t come back until January 30th at the earliest. Making it too late to get my next infusion in time. I’m becoming so hopeless because no drug is working 😢
Posted 1/25/2020 1:05 PM (GMT 0)
If you did develop antibodies to Remicade, that means you had a primary response, which is a good thing in the sense that it means Humira or Simponi is likely to have an effect. And it is less common to develop antibodies to Humira/Simponi.
Posted 1/25/2020 2:04 PM (GMT 0)
Did you have response from the loading doses? I'm not sure that having that reaction necessarily means antibodies or that having another infusion could kill you. I have heard of it happening to others and they just have to have pre meds at each infusion. What does your doc say? I don't think he would say to continue if it could kill you. I'm sure you will be monitored very closely with the next infusion.

Talk with your doc and see what he recommends.
Posted 1/25/2020 2:19 PM (GMT 0)
I was completely fine with the loading doses. The nurse who did my infusion recommended that I have premeds and get infused over 3-4 hours instead of 2 so that’s what my GI ordered. He didn’t say much else besides that.
Posted 1/25/2020 2:43 PM (GMT 0)
If I were you I would go ahead with that plan since you had good response to the loading doses. The nurse has likely seen this type of reaction before. The pre-meds and the slow infusion speed should prevent another reaction. If you do have another reaction they will stop the infusion and then you will know you can't have it anymore. But I really suspect that the pre-meds will take care of the problem

If you had said that you didn't see any improvements with the loading doses then I would suggest that you move on, but since you said you had good response I wouldn't give up on it yet.
Posted 1/25/2020 2:49 PM (GMT 0)
I responded well to the Remicade but I started having flare symptoms 2 weeks before my 8 week infusion which makes me assume that my Remicade levels were low. My GI also increased my infusions to every 4 weeks but we will see what the levels come back as.
Posted 1/25/2020 5:03 PM (GMT 0)
SMW, when I was on Remicade I had a reaction on my 3rd dose. I had the same experience as you, except no hives. I was given IV Benadryl & soluble Medrol. We waited a little over an hour & resumed the infusion at a much slower rate & I did fine. From that point on I was given premeds & never had another problem. It took from 7:30 until 2:30 to complete the infusion, yes, a very long time, however, it worked.

I hope you get to feeling better.
Posted 1/26/2020 5:35 PM (GMT 0)
Why would getting your test results on Jan. 30 prevent you from getting your next infusion? You said your last infusion was Jan. 20? Are your infusions less than 10 days apart?
Posted 1/26/2020 5:38 PM (GMT 0)
My infusion on January 20th wasn’t completed because I had a reaction 15 minutes into the 2 hour infusion. My medication wasn’t resumed after my reaction.
Posted 2/19/2020 3:41 AM (GMT 0)
**Update on Remicade reaction**

I went to the infusion clinic 9 days after my anaphylactic reaction to the Remicade infusion. I was given an IV steroid followed by IV Benadryl and Claritin before starting the infusion. The nurse started the medication as slow as she could. I had an anaphylactic reaction within 20 seconds....soooo no more Remicade for me sad I'm wondering if this will happen with Simponi or Humira since they're also TNF inhibitors....
Posted 2/19/2020 1:14 PM (GMT 0)
That must have been scary! I'm glad you're okay. Hopefully you can find something else that works.
Posted 2/19/2020 2:32 PM (GMT 0)
Wow, hope you find something new that works for you.
Posted 2/19/2020 7:26 PM (GMT 0)
Sorry to hear about the infusion reaction. Sounds like antibodies, did you ever get tested for those?

If antibodies were the cause, then they apply only to remicade and not others. Whether your body might similarly create antibodies against another biologic, maybe? You can start a thiopurine (azathiopurine/imuran/6-mercaptopurine) to reduce the odds. Xeljanz cannot have antibodies created against it, another alternative if you want to avoid other IV/Injectable biologics.
Posted 2/20/2020 2:19 PM (GMT 0)

iPoop said...
Sorry to hear about the infusion reaction. Sounds like antibodies, did you ever get tested for those?

If antibodies were the cause, then they apply only to remicade and not others. Whether your body might similarly create antibodies against another biologic, maybe? You can start a thiopurine (azathiopurine/imuran/6-mercaptopurine) to reduce the odds. Xeljanz cannot have antibodies created against it, another alternative if you want to avoid other IV/Injectable biologics.

I did get tested but I don’t know the results. I haven’t seen my GI since the second reaction. He went to India for a month and a bit for volunteer work, which is super irritating when there’s a shortage of specialists where I live.

He wants to start me on 6mp but I haven’t started it yet. I’ve been ill with a c. diff infection and don’t want to introduce new medication while I’m unstable. I see a different GI on Monday to discuss my next drug option. I’ve already tried Entyvio and that didn’t work for me.
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