caret icon Back to all discussions

Infusion reaction and next steps

I just had my fourth Remicade infusion today (first of the 8 week grouping) and I had a severe reaction. Has anyone else experienced this? What medication did you switch to? Did it help?

  1. What was your reaction? Did you take benadryl with the infusion?

    1. Yes, they gave me Benadryl as usual before the infusion. About 30-45 minutes in I developed hives and my throat started to close up. Luckily the nurses reacted very fast and stopped the infusion and gave me medication to stop the reaction.

      1. I hope you’re ok. Remicaid was a disaster for me too. I hate the fact that they don’t have an antidote.

    2. I’m suffering from an Entyvio reaction. This past week was horrible. It’s very frustrating because my Dr had his nurses take my call, they waited 24 hours to call me back. I asked for something for nausea and no reply. I left an email message too. I only mentioned feeling sick one other time, and never ask for help. I’m beginning to think that the medical field in New York is becoming a meat market. As long as you shut up and take what they say, you’re a good girl. I’m considering stopping this medication. I’ve failed on Imuran, pentasa, remicaid and humira. Entocort works but my new Dr doesn’t like me on it. Have a skin cancer risk, so options are limited. I noticed this time the nurse( in training) didn’t give me all of the saline iv. Ran the Entyvio fast too. Maybe it was too fast or concentrated? I had to stay out of work all week. It ruined my entire month. I know we all suffer together so need advice. What are my options?

      1. oh dear! I am so sorry to hear that you're suffering from a reaction and are not getting the support from your doctor's office. I know it is pretty standard practice for staff to have 24 hours to return a call (unfortunately). What did they say when they called you back? Were they receptive to your concerns and offer any ideas for relief?

        Your doctor certainly should be willing to listen to your concerns and take them into account. I'm not sure what your options are other than to continue to make noise to let them know you are not doing well, and, based on the outcome, determine whether or not you want to find a new doctor. Is this your GI doctor or primary?

        Also, I hope some of our community members here can also share with your their ideas and opinions on next steps. You certainly deserve to have the support of your doctor and nurses, especially when having a reaction to a medication. Sending you gentle hugs. -- Warmly, Christine (Team Member)

    3. Hello there. The office never responded. I even sent a detailed message to the Dr. was never rude or disrespectful. I don’t usually call with complaints, so it is baffling. Thanks for caring

      1. oh my goodness, I am so sorry to hear this! It is just baffling to me as well when offices don't respond when patients reach out. How incredibly frustrating and discouraging. Are you still experiencing the reaction /nausea from your infusion? While I know it doesn't help with the current situation or problem, please know that our community is here for you! -- Warmly, Christine (Team Member)

    Please read our rules before posting.