Some quick Remicade questions

[Louiss!]

So I have my first Remicade infusion scheduled for Friday. I've done a good amount of research around here and I'm much more comfortable going into this now. However I do have some quick questions..

1) Does everyone start out getting pre-medicated? Do you have to ask for it? Or do you only start getting pre-medicated if you have a reaction? They never mentioned anything about pre-meds to me and I was just wondering because I was actually looking forward to just getting some Benadryl beforehand and being able to sleep through most of it :lol:

2) I've read that it makes a lot of people really tired afterwards. Is this to the point that you wouldn't be able to drive yourself home? My mom will be with me for the first few infusions but after that I'll be on my own since I'm moving out in June. So will I be able to drive myself home or should I arrange for someone else to come with me?

3) This is probably a weird question, but does the medication feel weird at all while going in? I've never heard of anyone complaining of pain, but does it feel cool or warm or give you a funny taste in your mouth? Or is there just no feeling?

4) This kind of goes along with number two, but will I be okay to be out and about the next day after the infusion? Or does the tiredness/fatigue last longer than that? I have plans the next day but they're not until night time, so do you think I'd be okay to go out?

And that's pretty much it! I'm weirdly excited to go in for my infusion. The scheduling nurse told me that I'll have lunch served to me and a TV in the room and free wifi if I want to bring my laptop or they even have their own computers there I could use! Sounds like it won't be too bad of a time. I'll be sure to update on how it goes.

Thanks in advance for any help/advice! :biggrin:

 

[Manzyb]

Hi there!

When I started remicade... although it was 12 years go when I took it, yes I was premedicated. I wasn't given the option, they gave me tylenol and benadryl before they started the infusion.

It did make me pretty tired, but then again, you take benadryl beforehand, so that might be why. I always did feel tired for the first day, and I usually used the day after as a recover day. I was still a bit tired and worn out, but nothing that was any different than normal fatigue from the Crohn's. You should be fine to drive yourself home, but again, I think it just depends on how you do with Benadryl. I drove myself home all of the time after the infusions.

The infusion itself didn't feel like anything. Not warm/cool/stingy nothing

You should be fine the next day! You might be a bit tired, but nothing that should keep you from doing something that you want to. I usually took the day off of work the next day, but I probably could have gone in.

I hope you do really well in the Remicade!! I felt great on it when I took it!

 

[LilRocker]

Hi Louiss! I am also new to the forum and had my first Remicade infusion last Monday (Feb27). Like yourself, I was apprehensive prior to the procedure. It was a total non event. I was not given per meds, felt no pain and could not really tell that the infusion was in progress. I drove myself home afterwards with no problems but I should also say the infusion center is not far from my home. I was tired afterwards but am always tired. The next day was very much like every other day.... Except I no longer have blood in my BM. I call that success. Hey we count all victories! I encourage you to go in for your infusion, have a good nap and feel better very soon!

 

[Kerry]

Hi,
Im i the UK so it might be differet here but I had my first infliximab infusion 2.5 weeks ago and my second last week. We only get it in the UK when other drugs fail as its expensive. I understand its the first thing they use in the USA. Wish it was here after going through 7 months of drugs not working.

I had to have a chest xray before the first infusion as they have to make sure you have no signs of TB. The infusion itself was a non event - no feelings at all. I had a room with a TV and a nice lunch so it was like a day out. The only scary thing was they told me what would happen if i reacted and said they had the antidote there ready with adrenalin if needed. That freaked me a bit. I had few anxious days afterwards too but apparently if your going to react you will do it whilst your in hospital. I was fine to drive myself home.
Im off work at the moment as ive got so ill before i was given the infusion but i did feel tired for 3 days after. Within a week i felt brilliant. Interestingly the second infusion made me tired for a few days too which i wasnt expecting. But all signs of CD went within a week and im just left now with weakness - i have lost so much muscle from being bed bound for a month.

Infliximab has been a great success for me and i have a plan now to have it again after 4 weeks and then every 8 weeks for a year then onto azathioprine. Im starting IVF as soon as im well enough and im thankfull to infliximab for giving me my life back.

Good luck.

 

[ThanksP]

The only thing I notice while getting the infusion is that I get cold a little over halfway into it. So now I just bring a travel blanket since the infusion center no longer supplies blankets. My last two infusions I got one hive. Yes, ONE silly little hive. So from now on I have to have Benadryl prior to the infusion. Thanks, lone hive.

I get a little tired during infusion but have no problem driving home. I just take a nap when I get home and I'm good to go. No side effects, nothing.

Like everyone else said, it's pretty much a non-event.

 

[moogie]

Good morning,

I've been getting infusions since April of 2011.

I do get pre-meds always, my docotr prescribed them, So I did nto have to worry about it. Steroids, benadryl and tylenol.

The first few infusions really made me tired. I can drive but I feel like I have been up for 24 hours strait. My drive home is 15 minutes so it's really close. I get my infusions on friday afternoon at 3h30 and When I get home at 6h30 I sleep right through until the next day. Then I'm fine.

I never felt anything getting the meds. I feel nothing at all. It's like seline. Quite benine.

Always keep in mind though that we are all different. So you might react a little bit different. My suggestion to you is have somebody with you the first time and clear your calandar for the following 24 hours. This way if you feel tired you can rest.

Good luck to you.

 

[Becky]

The hospital that I first got remicade did not pretreat. They just started it really slow. I never had a problem.

I am a little tired afterwards but not bad. I always drive afterwards.

I have never felt anything while getting the infusion.

It has been a wonderful medication for me. Good Luck!

 

[MTBrwithcrohns]

I think the tired comes from the premeds... I was on remicade while in the Army and I was able to return to duty a few hours after getting the infusion. The only thing you should feel is the needle if the nurse is bad.

 

[etta]

Hi Louiss, good luck with the infusion, I'm nearly 5 years on this drug and it's changed my life!! I was not offered pre-meds and luckily I've never had a reaction. My blood pressure drops during and after infusion but I'm always fine to drive myself home afterwards. I'm usually tired that night (in the early days I went out clubbing after one of my infusions and it took me nearly a week to recover!). So I usually hit the bed early and have a lie-in the following morning (I time my infusions for Fridays where possible). I've never noticed a funny taste or even a sensation of the drug going through my vein - I drink a lot of water the night before and morning of infusion to get my veins plumped up. And in my hospital in Ireland there is no wifi, no computers, the TV is ancient with rabbit ears and snowy reception, but I do enjoy the chance to rest and relax!

Good luck and hope after a few infusions you'll see the difference in your health.

Etta

 

[Roxymusic]

Louiss, I have had three infusions so far and to answer your questions for me:
1.) I have had pre-meds each time - a steroid and benadryl.
2.) They halfed dosages the second and third times but I will have pre-meds forever per my Dr. His choice. I slept through the first one pretty much and not all the time for the next two. I ate pretzels and drank OJ. Definitely not tired the evening afterwards, the steroid kept me awake all night and pretty much the next day - just was tired after the infusion.
3.) I have to get the infusion in my hands - generally don't feel anything
4.) You should be fine the next day - even with no sleep I was alert the entire day after each infusion

Randy

 

[chrisnsteph1022]

1) They automatically gave me benedryl and tylenol. It was in the doc's orders. I usually doze in and out during the infusion.

2) I think it's the Benedryl that makes me drowsy, for the most part. I always have my mom go with me for company (she's retired, so she doesn't have to miss work), but I think I'd be fine driving myself home. I'm usually pretty exhausted that day and the next, but not to the point that I wouldn't be able to get out. I don't know if I'd be up for dancing at a night club the next night, though.

3) I don't feel anything when it's going in.

4) It depends on what you're doing, but you'll probably be fine.

Good luck!

 

[Lisa]

1 - When I first started Remicade I did NOT get pre-meds....it was only last year that they started giving me them (IV Benadryl and solumedrol) - due to an outbreak of what is possibly drug-induced psoriasis.....no big deal - and I actually asked for the IV Benadryl vs. the pill because I bounce back from it quicker

2 - I think my tiredness is from the benadryl...I usually schedule my appointment for 1230pm, have lunch there and go home after (I drive myself an hour home).....I have had it done in the morning once, and came to work afterwards with no problems. The first time or two I would have someone just in case you don't feel like driving....and they can be company!

3 - the only things I feel going in are the benadryl and the solumedrol. The actual remicade is like a saline drip....

4 - I don't restrict myself at all the day after. Usually go to bed a little early the evening of, but I am back up at 6am getting my daughter ready for school and heading to work myself.....

 

[Louiss!]

Thank you so much to everyone for all the help! You guys are great!

The infusion is tomorrow so I'll be sure to write back and tell how it goes. From what you all say it shouldn't be bad at all. My plans the next night aren't too crazy, just going out to dinner and a movie. So if all goes well I'm sure I'll be up for that.

I also began taking Purinethol today, which I understand is basically the same as 6MP/Azathioprine/etc. So I'm really hoping these drugs are gonna start working and make me better again *crosses fingers*

 

[jxarias1]

Hi, Louiss. When I had my first Remicade shot without premeds, I broke out into red hives, had shortness of breath, chest and lower back pains shooting through like a lightning bolt. The infusion was stopped immediately, and my doctor ordered Benadryl. I was then able to continue. Since then, I usually have my premeds, eat a good breakfast, fall asleep during the infusion, wake up for lunch, and wake up groggy. I drive myself home, drink lots of water, and go to sleep for the rest of the night. However, I do wake up fatigued, get little spurts of energy, but tire easily. SO I've learned to take it easy the next day, especially when my fever kicks in, my face gets red and swells also. So I drink Benadryl tablets to relieve these symptoms. The next day I take the rest of my steroids and I am left with slight blurred vision. I try to go to work like this, but the fatigue kicks in a bit so I call it a day and go home. Rest up...there's always next weekend to do something. You'll find that your health becomes more important.

 

[kllyeve]

I am through the loading doses
1) I am getting pre meds as they are supposed to help prevent having any reactions down the line to Remicade

2) i am very tired that day during the infusion as the Benedryl knocks me out. I am too dozy to drive home so I have my guy pick me up.

3) It feels like any other IV - cold going in somewhat. I take a blanket with me as the IV makes me very cold- it is room temp solution and cools me down from the inside.

4) I am a little tired the night of the infusion. The next day I am fine, by the night after the infusion the Remicade "flu" hits me - achy sore and tired this lasts for 2-3 days. It was less of a reaction after the 3rd infusion than the 2nd.

 

[Louiss!]

Well I had my first infusion today!

Everything went great! Nice and smooth. I was called right in and got the IV started [only got poked once, the nurse said I have good veins. Always nice to hear!] I did get pre-meds. Benadryl, extra strength Tylenol, and a steroid. Then after that the Remicade started and it was pretty smooth sailing from there. I was served a turkey sandwich for lunch and it was so-so. What do you expect from hospital food? lol. After that I began to feel a bit sleepy and dozed off for a while. When I woke up the Remicade was done and I was all good to go! Simple as pie. The only complication was that my blood pressure was going a little low during the infusion, but my blood pressure always runs low so that's nothing new.

Afterwards I did feel a tad bit drowsy, but my mom took me to Chilli's for lunch and I was perfectly fine. I decided to treat myself and indulge in some buffalo wings which I've been craving for weeks, but normally that is something I would NOT touch. Thankfully I'm on pain meds so I didn't have to feel the wrath of the wings By the time we got home I was pretty tired and took a nap for a couple hours, but I've been up and awake ever since and I feel perfectly normal. I think I'll be okay to go out tomorrow night.

Now it's time to see if this truly is the "miracle drug". Hoping I'll start to see some changes!

 

[stacichristine]

Just saw my dr today and am leaning toward starting Remicade also. This info has been very helpful for me, and hope I will make the right decision!! Got to get all my tests done first to make sure I am good to go, and get insurance approval, etc. Thank you ALL for posting your opinions! You don't know how good it feels to have others who GET IT!!!! Actually, you probably all do!!