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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Finished First Infusion


 
09-14-2014, 07:48 AM   #1
DJW
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Finished First Infusion

Well I had my first infusion of Remicade yesterday. Pretty uneventful. I had some tingling in my lips so the gave me some benadryl. Looking forward to my next dose.
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09-16-2014, 08:29 PM   #2
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Thanks for sharing! So I'm guessing they didn't pre-medicate you then. I've heard others given benadryl before just in case they get a reaction. I'm hopefully starting next week! My Dr's office is still working with the insurance company. How long did process take from start to finish, minus any waiting room time?
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09-16-2014, 08:39 PM   #3
DJW
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I'll probably be given the benadryl before my next infusion starts.

It took longer than normal this time. They stopped the infusion when they gave me the benadryl. They also keep you around after to make sure there is no delayed reaction. Total time was about 4 hours. The nurse said it will take about 2.5 hours after we get into the grove lol.

One tip - drink lots of fluid the day of the infusion and the day after. This dilutes the remicade concentration in your blood stream.

I hope yours is as uneventful as mine. And brings long remission for you.
09-17-2014, 02:00 PM   #4
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Thanks for the advice! I'll definitely make sure I'm well hydrated. Hopefully I don't have a reaction, I haven't been exposed to very medications but I don't think I'm the highly allergic type. Did you bring someone with you?
09-17-2014, 02:20 PM   #5
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I brought my iPod to listen to music.
09-18-2014, 03:13 PM   #6
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The nurses I see have talked to me about changing me from humira to infliximab and I am really confused. They originally gave me a choice and I chose humira because I could do it myself quickly at home. I live on my own with my daughter and have no family around to help me so staying in hospital all day and then having to take 2 buses back home afterwards doesn't fill me with excitement. They told me humira would work best in my situation but now they're telling me that infliximab will be best but I don't know why. I'm reading all about it where I can but it doesn't sound too bad after reading some of your stories
09-18-2014, 05:38 PM   #7
DJW
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Thanks for the advice! I'll definitely make sure I'm well hydrated. Hopefully I don't have a reaction, I haven't been exposed to very medications but I don't think I'm the highly allergic type. Did you bring someone with you?
Haha, I reread your question. I had someone pick me up. I also took my iPod.
09-22-2014, 11:53 AM   #8
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The nurses I see have talked to me about changing me from humira to infliximab and I am really confused. They originally gave me a choice and I chose humira because I could do it myself quickly at home. I live on my own with my daughter and have no family around to help me so staying in hospital all day and then having to take 2 buses back home afterwards doesn't fill me with excitement. They told me humira would work best in my situation but now they're telling me that infliximab will be best but I don't know why. I'm reading all about it where I can but it doesn't sound too bad after reading some of your stories
Hi Evie! Yes I've been reading up on a lot of people's successes with it as well, of course it doesn't agree with or work for everyone, but I think it's worth a shot if that's what your doctor is suggesting. I am getting my first infusion tomorrow and am excited!
09-22-2014, 11:55 AM   #9
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Keep us posted.
09-22-2014, 08:12 PM   #10
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DJW. Glad things went well. I hope remicade works for you.
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09-23-2014, 04:15 PM   #11
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Okay so I just got done with my first infusion, they premedicated me with Benadryl, decadron, and Tylenol, which all made me sleepy and kind of slump, but I didn't fall asleep. I probably could have if I didn't have such a chatty guy next to me. Anyways, when they started the remicade I didn't feel anything, so they increased the speed of the drip. Once it got up to 150 they checked my vitals, and my blood pressure had dropped slightly from when I first got there (they said from benadryl most likely) but everything was good, so then they bumped me to the maximum speed of 250, and things were still fine. At the very end when there was only a few drips left I got a sudden sharp burning pain on the side of my arm where the iv was, there was no visible hematoma, redness, or excessive swelling, so she ended up disconnecting it after and skipping the flushing of the tube and I was fine after that. When it was time to leave I noticed my legs felt a little weak, I don't think it was from sitting because I have to do that at my job for hours frequently. I was there from 11-4, so 5 hours altogether. Right now I feel tired and achy, but my symptoms don't feel any different. The nurse said most notice a difference right around their next infusion at two weeks. Dave how are you feeling?
09-23-2014, 04:28 PM   #12
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Sounds like it went fairly smooth. That's good news.

I'm noticing a couple of things...both making me very very happy. I've been dealing with ulcers under my ostomy base plate for the last 2 years. I noticed today the ulcers are drying up and starting to close over. I also went for my usual walk this morning (25 min). I was able to go for another walk this afternoon. This one was an hour long (usually I could only do another 30 min). I'm tired and tomorrow may be a write off but this is the most I've been able to do in a couple of years. I think I'm finally headed in the next direction.

I hope you feel great soon.
09-23-2014, 11:52 PM   #13
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That's great, I hope it continues to get better! The Benadryl seemed to wear off around 8 pm and suddenly had a small burst of energy (not normal for me, I normally start to wind down, and go to bed around 10, unless in pain from bm) I feel like this is too good to be true, but I had two bms tonight (normal for me) but I had almost no drainage from my fistula afterwards... I ALWAYS have increase in draining directly after bms. I feel like it is too soon to be noticing but I haven't had this little drainage in one night regardless of bms or not, in probably at least 6 months since my flare started. I'm curious what it will do tomorrow! I have one open draining fistula, many blind ending ones that don't break to the skin, two of which I can feel and are painful and hard, and they seem to have had a little edge taken off as well, when normally after bms they are at their worst. Very excited to report!
09-24-2014, 05:44 AM   #14
DJW
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That is great to hear.
09-26-2014, 10:53 PM   #15
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Well after a week of feeling a bit better energy wise today I was back to my usual wiped out self. Slept most of the afternoon and didn't go out at all. Thankfully my next dose is this Tuesday.
09-27-2014, 06:06 AM   #16
syzygy
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It's really helpful to hear how you guys are doing with your first experiences on the med. I'm expecting to start in a few weeks.

DJW, I hope your energy picks up soon.
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09-27-2014, 06:15 AM   #17
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Keep us posted.
09-27-2014, 09:26 AM   #18
nogutsnoglory
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I'll probably be given the benadryl before my next infusion starts.

It took longer than normal this time. They stopped the infusion when they gave me the benadryl. They also keep you around after to make sure there is no delayed reaction. Total time was about 4 hours. The nurse said it will take about 2.5 hours after we get into the grove lol.

One tip - drink lots of fluid the day of the infusion and the day after. This dilutes the remicade concentration in your blood stream.

I hope yours is as uneventful as mine. And brings long remission for you.
Glad the infusion was largely uneventful. Why drink too dilute the remicade? Never heard of that.
09-27-2014, 09:43 AM   #19
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It was on the advice of the nurse. Maybe it lessens the chance of a reaction during or right after the infusion.
09-29-2014, 01:38 PM   #20
araceli
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I am glad you are noticing improvement with your loading dose. Give it time and you will feel better and better. It took a while for my daughter to see full results.
09-29-2014, 01:47 PM   #21
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One thing I have noticed. When I started feeling better for a week...I realized how lousy I have felt for the last couple years. I just got used to it.
09-29-2014, 01:51 PM   #22
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Glad the infusion was largely uneventful. Why drink too dilute the remicade? Never heard of that.
I haven't heard of that either - doesn't make any sense either, I could see them wanting you to be hydrated to make getting a line in easier, but I don't think the difference in blood volume would make any difference with dilution....
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09-29-2014, 04:45 PM   #23
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I will ask again tomorrow. And pay attention.
09-30-2014, 02:11 PM   #24
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Second infusion went well.

Asked about staying hydrated before and after infusion.

Before infusion - makes finding a vein easier.

During/post infusion - more volume of blood means less concentration of Remicade in the blood.

Either way (useful or not) staying hydrated is a good idea so I will continue doing it.
09-30-2014, 04:38 PM   #25
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Glad the infusions are going well. I totally get it before an infusion as far as making it easier to place the iv but still don't really get the blood concentration thing.
09-30-2014, 07:30 PM   #26
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I know if I drink a bottle of G2 or or other fluids I don't need to stick around for a small bad of if fluids.

I'm all for that.
09-30-2014, 08:29 PM   #27
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They give me the fluids during my infusion regardless but once the remi bag is done they don't give me anymore fluids.
10-01-2014, 10:39 AM   #28
araceli
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My daughter gets the fluids after infusion. I think also is a great idea to stay for a while in case of reaction to remicade.
10-01-2014, 10:43 AM   #29
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Nurse just left. The ulcers under the ostomy wafer are almost healed. Over a year of nurses visits will likely end in 2 weeks...after 2 Remicade infusions.

Sooo very happy this morning.
10-01-2014, 11:31 AM   #30
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Nurse just left. The ulcers under the ostomy wafer are almost healed. Over a year of nurses visits will likely end in 2 weeks...after 2 Remicade infusions.

Sooo very happy this morning.
That is SOOO great! Congrats!!!! You must be ecstatic!
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