My experience with my first Remicade Infusion

By Lenora Taylor Monday, September 15, 2008

I've been holding off on the Ramicade infusion because of all the bad stories I read about it.  My doctor finally convinced me.  After taking two necessary vaccines 2 weeks apart (vaccine for shingles and for pneumonia), my appointment was set for Aug. 27 at 9am.

I started getting a little nervous the night before the infusion.  But I had a restful night.

The next morning, I woke up and had a big breakfast.  I was told by my Doctor to have someone take me and pick me up on the day of the infusion in the event something went wrong and I was not able to drive.

I arrived and was escorted to a room with about 12 comfortable looking chairs with IV hanging from each one.  Two elderly women sit there talking happily while getting the infusions.  The nurse told me to pick a chair and I picked the one closer to her just so she could keep a close eye on me.  She asked me if I had taken my Allegra D and Nasacort for my allergies and I responded that I had.  She asked me if I had received the vaccine for Shingles and Pneumonia---I said yes.  She asked me if I wanted to take one Tylenol in case I felt any discomfort---I said yes.

She proceeded by looking for the perfect vain on my arm and inserted the needle---the IV first dropped saline and then the Remicade.  The nurse constantly asked me if I was ok.  At some point he gave me a TB skin test on my forearm and asked me to come back in two days to check the reaction.  I was done with the Remicade in about 1 hour and a half.  Time flew quickly since a lot of people came in and out of the room----we also had a small TV.  The whole infusion went great but my day wasn't over---I was asked to go next door to the lab to get a blood test to make sure all my organs are ok.  I can say that I've been kind of sickly for most of my life and gotten MANY blood test.  I don't like them, but it's the necessary evil....so I thought nothing of it.  I walked next door and waited until they called my name.  A few minutes later, a young guy called my name and takes me to the back.  He's very friendly and we have the usual friendly conversation.  He's looking at my arms looking for a good vain and seems not to have any good luck.  He looks at my left arm and I tell him that I was just given the infusion on that one, so I made the comment to him that I think the ‘good vain's taken'....he smiles and goes back to my right arm.  He slaps it a little, tells me to squeeze on a foam ball and slaps it again.  He inserts the needle and I turn away (I will pass out of I see the tube being filled with my blood) so I look for things on the wall to read so it takes my mind away from what's happening.  I start feeling as he's moving the needle around inside of me----I start panicking in silence. He continues to ‘swing' the needle back and forth----an older nurse approaches as if she knew what was happening----as soon as she asks if everything's ok, the needle must of hit something that made it hurt like a B&*^%!  I make it know that I'm in pain.....the older nurse takes over and pulls out the needle and tells me everything's going to be ok.  I suddenly feel dizzy as if I was going to pass out.  I ask her to give me a few minutes to compose my self---she hands me some water.  I start to feel better and in about 3 minutes I tell her I'm ready to do it all over again.  She looks at me and re-affirms that I will be ok.  She puts think rubber band around my upper arms and tells me to squeeze the rubber ball.  I feel a slight prick and in no time she done.  I kept thinking to myself how important it is to have someone with more experience do these kinds of things.

9/17/08 2:01pm

Hey Lenora,

 

Just wanted to say how much I appreciate your posts.  I've not been put on any biologics as of yet, but I know someday that too may come.  It's comforting to read some of the step by step stuff people experience.  It kinda takes some of the mystery out, which is really what can keep a person up at night.  The more I learn from people like you, the less I'm likely to completely flip if my doctor ever says "Remicade".  So anyway, just thanks.

9/19/08 5:22pm

I I hate needles Cryand have had the same kind of experience with having blood drawn.  I don't have good veins to begin with, they are small and tend to roll away from the needle.  When I was pregnant with my son, who will be 20 years old this winter, I had my first experience with regularly scheduled blood work.  I had gestational diabetes and had to have blood drawn every week.  I had a nurse who wasn't very good the first time and then a different one drew it the next week.  Wow, what a difference.  The first time I had a big ugly bruise but the second time not even hardly a spot.  I got to where I would go ask this lady what days she worked the next week so I could go in on her days.  (She only worked part-time then) She has become one of my best friends and when I go to a new doctor, if I need bloodwork I usually will let their lab do it once, but if it is not good, I will ask the doctor if they will write a prescription for the work they want done and then I go back to the lab where she works.  Luckily, she works for my general practitioner. So far this has worked for me.  When I was on Remicade I was lucky to always have good nurses who could get the IV in right away.  I still hate needles but I have learned to cope.  Hope today's infusion went well for you and the Remicade works.

10/16/08 11:06am

Ask if they can take the blood while (actually before, but with the same vein) doing the infusion. My veins are extermemly difficult, they have to go into the hand and have had to use a very tricky spot in my wrist a couple of times, but usually they take the blood then drop the saline right after. No second place to go for a second (or fifth or sixth) poke:)

Anonymous
Michelle gamble
4/18/09 2:02pm

I have never been on any medicine for my rhumation arthritis except for prednisone. My rhumatologist took some x-rays to disciver that my arthrits has gotten progressively worse.  He wants to put me on Methatrexate.  I have heard soo many bad stories about this drug. My gastrointerolist ( I also have uclerative Colits) suggested I do the remicade infusuion.  I know I need to take some kind of medication to slow down this rhumatiod arthritis. I am really torn which way to go

Anonymous
sunnyshields
6/ 8/09 7:29am

I have two friends on methatrexate.  I wanted my doctor to put me on mathatrexate for my arthritits, Krohn's disease, etc.  My doctor decided on Remicade.  I'm nervous about that because of the high cancer risk, which is also in my family, not just a side effect of the Remicade. 

 

My friends taking the methatrexate are doing extremely well and had been all sorts of meds before.  They look so much healthier now and are doing much better.

 

I'm stuck trying Remicade.  I don't start for another month until after I have some surgery.  I hope it works as well as the Methatrexate has for my friends. 

 

The Methatrexate does cause nausea for a few days, but I'm use to that anyways.  From my experience Methatrexate has worked wonders for two friends and two other friends that actually took it after breast cancer.  They are all doing well and have not terrible side effects other than the nausea and thinning hair. 

 

The thinning hair actually looks better.  It's softer.  My hair has looked sickly ever since I've been sick for several years; therefore, I'd be happy to have my hair look as soft and pretty as theirs.  I wish I could convince my doctor to use the methatrexate instead of the Remicade, but I will just have to wait and see. 

 

If the Remicade doesn't work, he will use methatrexate.

Anonymous
JV
11/ 6/09 5:11pm

My Doctor told me that Remicade was the best way to go since I was not having any luck with different pills I was taking for arthritits.  I also have colitis and Remicade is great for that too, he told me.  I was worried about cancer also since my mother had breast cancer, brother died of liver cancer and I have had breast cancer (yes, even men can have that too - 1 out of every 100 women).  I can't tell you how much Remicade has helped my body start moving again.  I can also tell when the 8 weeks is approaching for the next treatment.  As stated before, from the time I finish taking the infussion and leave the room until a few days before the next I am a new person.  Just do it! 

Anonymous
sunnyshields
11/ 7/09 11:58am

I did the first infusion treatment last Monday.  Unfortunately I had a lot of problems; however, I will see my GI on Monday.  I will wait to see what he says. 

 

Is it possible to have bad reactions to the Remicade at first but eventually the body gets used to it?

 

Anonymous
Anonymous
6/30/09 8:22pm

Hello,

 

I would like to share my personal experiences also because they're about the same as yours. I've had JRA and Uveitis since I was 2, and I am now 13. I've gotten Remicade (along with Methotrexate-oraly) since I was 9. I just recently added up all my times I've gone to get an infusion since 4th grade (I now going into 8th) and its been 67 times. I actually am going this thursday to get my 68th! I thought it was odd that you get your infusion then blood drawn. They always draw my blood first and then hook me up to the IV. I thought it was pretty cool to know I'm not the only one out there because sometimes it feels like I am. :) This is great to know! Thank you!

Anonymous
Noemi
9/14/09 4:06pm

Hello,

I read your personal experiences and i think you are a strong girl, because you started with this hard challenge since you were little. I do have the same as experiences as you and many people Ra AND I am doing Remicade too and makes me feel and think like you all there and is nice to read experiences of all of you about this CRAZY AND CHALLENGE WAY WHAT WE ARE LIVING DAY BY DAY...GOOD LUCK,

 

Hugs and smiles,

10/ 7/09 11:25am

Hi - I'm not on Remicade at present, but did have two infusions, before I switched to Enbrel.  I did not have any blood drawn at the infusion, either before or after, and so I'm curious what blood tests are done?  Does anyone know?

10/ 7/09 11:35am

According to my Doctor, these blood test are to check on your internal organs---mainly on the liver. Just a precaution to make sure that everything's funtioning well after the infusion.

10/ 7/09 11:40am

OK - I get liver tests done every couple months with some other tests, like CBC and creatinine (kidney). 

It was liver tests that made my doctor not try the standard DMARDS when I was diagnosed. At the time I was taking a combination of Celebrex (100 mg) and amitriptyline (10 mg), low doses of both.  When I stopped - the test was normal 2 weeks later.  Never been that high again, even though I went back to Celebrex for several years.  Maybe it was actually the arthritis! My GI doctor says inflammatory factors circulate through the blood & can affect any organ. 

    Better to be cautious than sorry, I guess!

Anonymous
my3sonstkl
12/ 8/09 5:10pm
My son is 7 yrs old and was diagnosed with JRA in March. He started out on naproxen and methotrexate orally. They changed the naproxen to meloxicam and the methotrexate to injection due to severe stomach pain. They have since added prednisone, enbrel, and folic acid and zantac to help with side effects. They have decided he is not seeing any changes and are considering changing the enbrel to remicade. Has anyone been on both medications and if so could you share your experiences with each medication is one better than the other.
Anonymous
Deb
10/14/09 11:33pm

I am getting my first remicade infusion tomorrow morning 10-15-09.  Don't know what to expect but planning on taking something to read and some water.  Hope it goes well.  I need to review the website on the possible side effects now.  But I'm looking forward to feeling better....

10/15/09 10:48am

Good luck!  I also took an iPod and played relaxing music---this also seemed to help since I was really nervous. 

The one thing I liked about Remicade was that once the infusion was over, I felt much better that same day.  But I felt tired and sleepy.  When I got home after being at the clinic, I just slept for hours.  So I would plan to take it really easy all day.

Let

10/15/09 10:48am

Good luck!  I also took an iPod and played relaxing music---this also seemed to help since I was really nervous. 

The one thing I liked about Remicade was that once the infusion was over, I felt much better that same day.  But I felt tired and sleepy.  When I got home after being at the clinic, I just slept for hours.  So I would plan to take it really easy all day.

Let us

10/15/09 10:48am

Good luck!  I also took an iPod and played relaxing music---this also seemed to help since I was really nervous. 

The one thing I liked about Remicade was that once the infusion was over, I felt much better that same day.  But I felt tired and sleepy.  When I got home after being at the clinic, I just slept for hours.  So I would plan to take it really easy all day.

Let us know

10/15/09 10:48am

Good luck!  I also took an iPod and played relaxing music---this also seemed to help since I was really nervous. 

The one thing I liked about Remicade was that once the infusion was over, I felt much better that same day.  But I felt tired and sleepy.  When I got home after being at the clinic, I just slept for hours.  So I would plan to take it really easy all day.

Let us know how

10/15/09 10:48am

Good luck!  I also took an iPod and played relaxing music---this also seemed to help since I was really nervous. 

The one thing I liked about Remicade was that once the infusion was over, I felt much better that same day.  But I felt tired and sleepy.  When I got home after being at the clinic, I just slept for hours.  So I would plan to take it really easy all day.

Let us know how it

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By Lenora Taylor— Last Modified: 10/26/11, First Published: 09/15/08