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Had remicade for the first time today -- feel horrible

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Ulcerative Colitis
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Posted 3/24/2012 11:39 PM (GMT 0)
I have been in patient with a flare of my uc since last Thursday. They had to all the required testing and started the infusion last night, but they had to stop it after about a tenth of the bag because I was having some reactions to it (itchy mouth, heart racing). They started it up again, this time premedicating me with Iv benedryl (they has given me oral last night). The infusion went okay, had to have more Iv benedryl halfway through. about 2 hours after the infusion I started feeling really sick, coughing, sweating, body aches, and fast heart rate. I have told the nurse and led student and they said it probably wasn't related to the remicade, but it seems like it is to
Me. I have never had the flu before, but this is how I
Would guess it would feel like. The new nurses come on in a few minutes and will round, I was just wondering if anyone has had a similar reaction?
Posted 3/24/2012 11:58 PM (GMT 0)
i get really bad headaches and arm/hand pains but that's usually it. i definitely think your reaction is from the remicade though and it's foolish for the nurse to think otherwise. i remember when i started lialda and broke out in horrendous scabs and rashes ALL over my face and body. i told my doctor and he said lialda doesn't do that and it was probably my detergent. you know your body best but give the remicade some time to see if it helps your UC.
Posted 3/25/2012 12:52 AM (GMT 0)
You definitely had a reaction to the Remicade. How could they think that what you felt wasn't related to the Remicade?? I would ask to speak with your doctor asap about it and not the nurse. Good luck.
Posted 3/25/2012 4:36 AM (GMT 0)
It's definitely the Remicade. Don't let the nurses tell you otherwise and talk to the doc. When I get my infusions, I have Iv Solumedrol and Benedryl a half hour before my infusion and still I get a tight feeling in my chest and arm pain. Headaches and some body aches afterward - I have to take Benedryl for 24 hours after each infusion. It sounds like you had a serum sickness related to the Remicade.
Posted 3/25/2012 2:39 PM (GMT 0)
Thank you twizliz77 for posting this. I am in the process of changing doctors and I am sure that this is going to be on the table as one of the possible ways to control the spreading inflammation in my colon.

Other docs have suggested this as a treatment. So it is so important for me and others to hear what others need to be aware of. I have been reluctant to take this path due to what I have read here and from what the docs have said. None of which has sat well with me.

I know some people have had a good response to this treatment and for them I am very happy.

As most of us now everyone has a different response to the different treatment plans they put us through.

I am sorry to hear that this did not go well for you.

All the best,

Jim
Posted 3/25/2012 3:08 PM (GMT 0)
Just a quick update, the doctors came in and aren't sure if it is because of the remicade or not, it appears there is less blood in my BMs today, so that's something. They have put me on tussillion pearls for the coughing ... My whole body hurts, I've thrown up 4 times this am, have had 4 BMs since about 9 am (11 am here now). There is some talk about releasing me today but I don't want to go home if I'm still sick. My bp has been high too... This am it was 167/111. They are saying it is from pain (currently 9), but I don't feel like they are treating it accurately... 6 duilodid oral every 8 hours... Wears out after about 4. I talked to my dr about it but they said they are trying to wean me off it so
I'm not on pain Meds when I go home. I get really anxious and worried about being in pain and it seems like a vicious circle, not sure what to do. I don't want to look like a drug seeker or a complainer, but it hurts so much and I just don't know what to do anymore.
Posted 3/27/2012 2:32 PM (GMT 0)
I have absolutely no side effects from the infusions, I can easily just go about my day! I know some reactions are very real, but be careful not to bring on problems because you are strongly anticipating them, because I think that can happen.
Posted 3/27/2012 4:19 PM (GMT 0)
I'm so sorry to hear what you are going through. I know I was in the hospital having an acute dystonic reaction to Compazine (in for my UC diagnosis). I couldn't even speak and my jaw was locking and no doc or nurse thought twice about it. I didn't know it was the compazine until I took compazine suppositories for nausea once I left the hospital and it started all over again. That time I had to go the ER and they thought I was having a stroke in my 20s. Turned out to be the med.

Are they giving you Xanax or something for anxiety other than Prozac? I know that anxiety/pain can create a bad cycle. But they need to figure out if it's the Remicaide or not BEFORE giving you more. I pray you get some relief mentally and physically soon. I feel for you.
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