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Remicade reaction and medication adherence

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Crohn's Disease
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Posted 12/14/2024 1:39 AM (GMT -5)
Hi all,
It’s been a while. Thankfully things have been mostly uneventful in the last few years for me health wise. I had a major issue though the other day. I was getting my remicade/Inflectra infusion at home and I had what may have been a reaction very shortly after it started. I’ve been on the drug for 8 years with few to no issues. This time I was hit with sudden crushing chest pain across my chest and down my left arm. My blood pressure went up quite a bit and the nurse called an ambulance. Went to the er and ruled out a heart attack and pulmonary embolism. So we are left with assuming it may have been a reaction. I will be doing bloodwork tomorrow to find out what my antibody levels are and see if it’s possible to try again or if I have to switch to a new medication. I’m having a really rough time dealing with this. Partially because I’ve found it really difficult for the last few years to keep a good consistent schedule with my other medications specifically the low dose (25mg) of 6mp I’m supposed to be on to prevent antibiotics from forming. I feel like if I fail this drug it’s my fault and I don’t really deserve treatment because I can’t find a way to take my daily medications consistently when I’m feeling well. I’ve tried apps, alarms, written schedules, you name it. I don’t know what to do. Any advice is appreciated.
Posted 12/14/2024 11:41 AM (GMT -5)
My situation is different from yours. I had this very same reaction on my 3rd dose of Remicade, this was back in 2004. The nurse stopped the infusion & called my gi, he told them to wait an hour or so & to add pre-meds, IV Benadryl, soluble Medrol & slow the infusion rate down. This worked like a charm & from then on this was my protocol. Back then my gi said typically when someone has a reaction to Remicade it generally happened on the 3 rd infusion. So many things has changed since then.

As far remembering when to take your meds have you ever considered one of the weekly pill holders. We have 2 for my husband, this is the only way to keep track of his meds, he's on quite a few.

Let us know your lab results.

Above all, don't be so hard on yoursel!
Posted 12/14/2024 7:21 PM (GMT -5)
Hey lab. Sorry to hear that. I had a different reaction the third time I started remicade way back when. Mine was an immediate spike of fever to 103 and violent shakes. Dr said no more and that's when I started the humira😋
Posted 12/20/2024 2:40 PM (GMT -5)
Thank you both.
Bloodwork came back but I haven’t heard from my doctor yet. Remicade/Inflectra antibody level was high- 21 on a scale that only went to 22. Wondering whether taking the 6mp and retrying it would do any good. I failed humira years ago so the next one according to my doctor would be Skyrizi.
Right now I’ve placed my meds by my keys at my front door with a bottle of water so I can’t leave without taking them. I’ve done pill holders but I wasn’t great with them. Going to place back up meds in my car.
Posted 12/22/2024 11:08 AM (GMT -5)
Lab,
I hope that taking the meds will drive your antibodies down so you can continue with Remicade.

I take methotrexate to keep mine down. We've had a few times where I've had issues after an infusion because I hadn't taken my methotrexate. We would then up the dose of methotrexate for 6 weeks, try infusion, retest levels and then sometimes extend the higher dose to 11 weeks or so. That's worked for me 4 times or more now.... Oh...and premeds are the norm for me now.

Just a thought... You might want to ask your doctor if you should up your dose of mp a little.

Hang in there!

(I also have a hard time remembering to take my methotrexate... My daughter bought me this necklace thing so I can put the pills in it... It looks like a decorated disc/locket... And she calls me on the day I take it and refuses to hang up unless she hears/sees me take them... ) Plus I've set it on my phone to an alarm system... Can you set up a support system like that? It's aggravating but it gets the job done. If your don't have someone willing to do that.... message me your number and I'll play it forward .. lol ....

Post Edited (clo2014) : 12/22/2024 11:13:47 AM (GMT-5)

Posted 12/31/2024 7:24 PM (GMT -5)
Thank you so much Clo, It so good to hear from you! I’m going to start another thread because it appears there’s some sort of potential heart issue going on as well. What ever it is came out of no where because I’ve had tons of tests over the years including an echo 2 years ago so we aren’t sure if the remicade is damaging my heart.
Unfortunately I can’t up the 6mp because I get severe nausea and vomiting from it. The half dose I take now is all I can handle. Thankfully I’m back on track with taking everything on time and hoping to stay that way. I leave it by my front door so I have to take it when I pick up my keys.
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