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Remicade Infusion

Jessi

Moderator
I had my 4th Remicade infusion last Friday. Immediately, my bowels returned to normal, after a week of gradually loosening stools. It's amazing how quickly it works.

It was a really scary experience this time, though. My vitamin levels were pretty low and my blood pressure was on the low/normal side. Because it was early morning, I was a bit dehydrated, as well. I drink water all day, but obviously nothing while I sleep. So when the nurse showed up at my house, I was just cleaning up my breakfast, and sat down with only a few sips of water. My bad.

I took the needle well, and the flush before the Remicade went well, too. However, immediately when she started the infusion, I started to lose it. My blood pressure dropped quickly and dangerously low. My body started locking up - every joint! I started to lose consciousness. My nurse ripped out my anaphlactic kit, and was ready to use it. But I kept talking. I never blacked out entirely, so no Epi needed. Whew!

She stopped the med flow and called my doctor. He said that I need to hydrate orally (since the supply kit at my house only had one IV bag, and it was being used for the Remicade mix), and then reintroduce the infusion very slowly.

She was really scared to start it again, but my blood pressure was rising back to a healthy number, so she followed instructions. I drank water, and she started it up again. I felt more confident this time.

It worked, and she gradually sped up the flow as the hours went by. Overall, it went well, but I was so exhausted the entire time. She asked me to stay awake for most of it, because she wanted to be sure I was still here. I admit, falling asleep might've been a bad idea at the time.

Needless to say, I crashed as soon as it was over, and she left my house. My vitals were good, I was just too tired to fight off sleep.

It's been 3 1/2 days, and I am still exhausted! Chores are being neglected.

My nurse and I learned a couple of valuable lessons for my infusions. Everyone is different, I'm sure, but for me, I need to be hydrated, relaxed, and good on vitamins. And for her part, she needs to start the infusions very slowly, with a gradual speed-up as we go. All in all, it took about 2 1/2 hours for the infusion, because I was able to have it all the way open by the end.

My Remicade nurse is really great. Her name is Amber. Her mom has Crohn's. Amber might have CD, as well, but if she does, she's been in remission for a couple of years. At any rate, she really understands the needs of her patients. She is both sympathetic and empathetic. I love her!

I just wanted to share this with someone. I was so scared. I did a lot of crying over this one. (I know. I'm a baby.) Has anyone ever had an experience like this one?
 
No I have not but thank you for sharing yours :) I get my 5th infusion in a few weeks but it will be my first infusion at an increased dose. I schedule the infusion for the morning, take the day off from work and usually sleep the rest of the day and night after. I think it's the Benadryl that wipes me out.
 

rygon

Moderator
I normally feeling a bit spaced out (eyes unfocus) whilst having remi but thats about it. Had my 3rd a few weeks back and my nurse always starts slowly and increases it every half hour or so. I think it takes about 2hrs all in all. Glad to hear you made it through, may be worth starting at a lower dose rate next time (and drink some water :p)
 

Jessi

Moderator
Does anyone else get home care infusions? I am the only person I know of that doesn't get them at a hospital or a clinic.

I'm more comfortable at home, but when something goes wrong, only my nurse is here to make decisions.
 
I get it at the doctor's office. I live in NYC so hospitals, infusion centers and doctors are everywhere. Plus, an at-home infusion would probably cost more than having it done in a medical office.

At-home infusion does sound very comfortable and convenient. Although, yes, I would also worry about potential bad reactions and having only one person there to administer help.
 

Jessi

Moderator
Thanks for responding. :hug:

We have infusion centers everywhere, too, but this was a stipulation to getting my Remicade for free through Johnson & Johnson. It's a liability issue for most infusion centers to infuse medicine which was not purchased.

Home Care is nice and convenient, but it really was scary to have my life in just Amber's hands. Don't take me wrong. My nurse is very competent. It's just that something could go wrong during an infusion. Know what I mean?

Home Care is surprisingly inexpensive. I always thought it would cost a lot, too. The supplies and medicine are all sent to me for free from J & J, so all I have to pay for is the nurse. Depending on the company, it's around $50/hour - $100/hour. Also, it depends on the care needed. The prices I quoted are for infusion care. There's also stoma care, wound care, house cleaning, meal preparations, family support, keeping company, hospice, etc. Whatever the person's needs. :)
 
Remicade and the flu

Hello all. Has anyone on Remicade ever battled w/ the flu?

If so, did you see Primary Care Physician for assistance w/ that and what did they do for you?

I've been on remicade for about 7 months, didn't get my flu shot, but am convinced that I do have the flu. Not getting better, but not getting worse.

Just not sure if would warrant Hospital visit this weekend to be safe. I usually wouldn't go to ER unless I'm losing a lot of blood or if things were broken, but I don't want to find out the hard way that you can die at age 32 from the flu b/c of Chron's treatment.
 

Jessi

Moderator
I'm sorry you're sick atm, Andrew. You say you're not getting worse, which is good, but how are you feeling? Are you staying hydrated? Only you can decide if you're feeling poorly enough to go to the hospital. I say, if you're unsure, then go see a doctor. :hug:
 
Wow Jessi- thanks for sharing...as far as I know and I live in Florida...they only do the infusions at the hospital...I am going to be starting remicade for the first time soon...I am scared...I really want it to work...my doc said it is the best as the others are spotty as to if they will work...he said now he has to talk to my surgeon and make sure the timing is right and my fistula is a bit better...
 

Jessi

Moderator
@ Julebuggie ~ Remicade is really great at healing fistulas, I hear. I really hope it works for you. I love how quickly it works for me. Good luck and keep us updated. :)
 
Thanks for responding. :hug:

We have infusion centers everywhere, too, but this was a stipulation to getting my Remicade for free through Johnson & Johnson. It's a liability issue for most infusion centers to infuse medicine which was not purchased.

Home Care is nice and convenient, but it really was scary to have my life in just Amber's hands. Don't take me wrong. My nurse is very competent. It's just that something could go wrong during an infusion. Know what I mean?

Home Care is surprisingly inexpensive. I always thought it would cost a lot, too. The supplies and medicine are all sent to me for free from J & J, so all I have to pay for is the nurse. Depending on the company, it's around $50/hour - $100/hour. Also, it depends on the care needed. The prices I quoted are for infusion care. There's also stoma care, wound care, house cleaning, meal preparations, family support, keeping company, hospice, etc. Whatever the person's needs. :)
Thanks for taking the time to explain. It does make perfect sense now how an at-home infusion can be cheaper (although, getting the Remicade free from J&J is a HUGE savings).
 
Hi Jesse...today will by my first time getting my remicade through home infusion. Ive had remicade like 6 or 7 years ago but they were done at the hospital, I stopped on my own because I was scared of the long term side effects. I decided to give it one more chance now. I have to agree that I'm more comfortable getting it at home, I can watch tv and actually have heat to warm me up instead of freezing in the hospital. And other thing God forbid something happens the hospital is 3 minutes from here. I hope you continue to do well with your remicade :)
 

Jessi

Moderator
That is so cool! Just me and you, then? We are the lucky ones. There are so many good things about home care. I hope all goes well today. Good luck!
 
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