• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

First Remicade Appointment

Kuwabara

Kuwabara

Alright guys just had a phone call from my local IBD nurse,I'm due in next Tues for my first Remicade infusion. Apparantly my Barium Meal found an infection in my bowel so they're pushing ahead to get me on remicade ASAP.

What should I expect? It is subjective as to what after effects I feel? Will I be able to go out the next day? I was gonna have a night out that night too!

I tried locating the main remicade thread but was unable to find it.
 
Cookie

Cookie

Hi James,

They will likely give you a shot of Benadryl in case you have an allergic reaction. That may make you sleepy. Other than that, I never had any side effects. I used to get mine in the AM and go to work afterwards and it ws never a problem. But seeing that it's your first time, you might want to wait and see how you feel before you commit to that night on the town! Good luck and have fun:wink:
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
Of course everyone reacts differently, but most of us are fine afterwards.
If they premedicate you with Benadryl, you will probably be very tired afterwards. I premedicate with Claritin (you'd need permission from your doc to do this) and I am fine after.

If you are looking for the Remicade Club thread, it is here-
http://www.crohnsforum.com/showthread.php?t=4544

Also - if you just click on your 'remicade' tag, there are many other threads about Remi on here.
Remi has given me my life back for now. I hope it works well for you!
Post on the RemiClub thread when you get back!
 
CrohnsHobo

CrohnsHobo

I never really had any side effects. I also don't take any pre-meds. Now I am on a large dose every four weeks and I do feel pretty run down and fatigued afterwards, sometimes I get fevers too.
 
B

beth

Remi for a bowel infection... I thought you shouldn't have it if you have infections?

Anyway, good luck with it!
 
Jennjenn

Jennjenn

I agree with Beth that I was under the impression also that if you have an infection that they usually would hold off on the Remicade untill it has cleared. But as far as your night out on the town the day of your Remi appointment I would see how you feel first...I usually feel tired on most days and on the Remi days usually sleep during it (because of the pre meds bendryl) and then go home and rest after because of fatigue. I am not saying that you will feel the same though!!

I just looked on a few web sites and this was on
http://www.flexyx.com/R/Remicade (Centocor Inc).html

What health concerns should I talk to my doctor about?

Before receiving your first treatment with REMICADE you should tell your doctor if you:

� Have or think you may have any kind of infection. The infection could be in only one place in your body (such as an open cut or sore), or an infection that affects your whole body (such as the flu). Having an infection could put you at risk for serious side effects from REMICADE.

I am sure your doctors made sure its ok but maybe just make sure and ask again to be on the safe side....
 
C

cheeky

I've now completed my first 3 remicade infusions... my next appt is January 15th

it's been completely fine. i don't get tired at all, i think the people who get tired are the ones who take benadryl to prevent an allergic reaction...

i haven't had any allergic reaction or side effects.

it seems to be doing the job. i haven't had any flare ups since late august... i even stopped my imuran after the second infusion (which i guess is a bit early, but i just don't wanna take it anymore so i'm testing the water)...

apparently the imuran may have helped make the remicade transition... apparently i've heard it's less of a shock to the system when you're already on imuran.

the only trouble is my veins are tiny, so it's a lil annoying when they can't get my vein right away... but once it's in... i'm good to go.

the infusion lasts about 2.5 hours.

the clinic i go to has a tv, so we watch movies.... or just relax... or read... listen to an ipod or text msg my friends on the cell.


then when you're done, you have the option of staying for an extra hour to rest and make sure that you're monitored... but i've never stayed... i feel completely fine when it's done.


good luck!
 
olumay

olumay

Hello everyone, my doctor told me that i need to get on Remicade. i was diagnosed with Crohn's May 2008. i have had surgery and apparently the Crohn's is back. how long do u think i will have to take Remicade and what will be the cost to me.
 
Kuwabara

Kuwabara

Thanks again for all the advice guys. I'm sure re. the infection, I'm sure he knows what he's doing. Unless there actually trying to get rid of me and its a huge Government conspiracy.

(BTW Shazz I'm currently listening to one of the latest cool things to come out of NZ - http://www.youtube.com/watch?v=KfgKDNe2jEw )

Olumay I think Remicade is indefinite so long as it works. If you become resistant to it other immunosupressants can be tried. As for the cost I can't help you with that,not being an American.
 
Kuwabara

Kuwabara

Me too brother. It beats caining the drugs day after day. Hopefully we'll both have numerous happy years on Remicade by which time those boffins in the laboratories will have consigned this disease to the history books.

NOW THAT'S OPTIMISM.

Welcome to the forum, Its a great place for info and to talk to some people who understand what you're going through. Everyone on here has been awesome to me and aided my understanding. I'm sure you'll find the same.

I'm sure someone will be along shortly to tell you how much the Remicade will cost you in the Great State of Maryland - Home to the greatest TV show ever(The Wire)
 
shazamataz

shazamataz

Kuwabara said:
(BTW Shazz I'm currently listening to one of the latest cool things to come out of .
Click to expand...
Yay for NZ music making it all the way over there - pity it's rubbish (in my humble opinion - I don't do pop!)
 
Jennjenn

Jennjenn

As far as the cost Olumay.... It depends on if you have insurance or not. and if you do how much they will cover of it you would have to check with them. In my case I do not pay anything extra for the Remicade (no copays) with Aetna. I pay my monthly costs to keep the insurance active. But for the Remicade in the hospital nothing extra.
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
olumay said:
Hello everyone, my doctor told me that i need to get on Remicade. i was diagnosed with Crohn's May 2008. i have had surgery and apparently the Crohn's is back. how long do u think i will have to take Remicade and what will be the cost to me.
Click to expand...
Hi Olumay - welcome to the forum.
If you start a thread in the 'My Story' section, you'll be sure to receive a more proper welcome.
Re: the cost of Remicade, it does totally depend on your insurance. My copay is $40 every time I go.
 
CanadianBella

CanadianBella

I had my first Remicade infusion lastweek. I had premeds, but they didnt make me sleepy or anything. For me it was a nice relaxing 4 hours. During my infusion my wrist hurt a bit in the arm I had the IV in, and the same arm was cold. Otherwise it was fine. Since then, I have noticed that any bloating I've had has gone away as well as some of the pain I've been experiencing. My GI told me it would be about 2 weeks to see any big changes though!
 
Cookie

Cookie

Olumy, I also did not have to pay anything for remi with my insurance, but if you do not have insurance, each injection is VERY expensive. Somewhere in the neighborhood of $3000-$5000. If you don't have insurance, you could also ask your doc about Humira as an option. I think it is cheaper because you give yourself injections. There is also a Humira thread on here somewhere if you want to see what others have to say.
 
Jer's Girl

Jer's Girl

For those of you just starting Remi- I think that it is the best drug out there. It was for me for a long time.

My one suggestion is to take the pre-meds. I never did for years because they made me so sleepy, but then someone explained to me that they keep you from having an allergic reaction, which can happen anytime. If you like the Remi you will not want to go off of it some day because of randomly developing a reaction. It is not worth it. I just had to bring a driver since benadryl makes me too tiered to drive. I felt so good by the next day that it was worth it.

Good luck!
 
J

jec1126

James-
I first had remicade 4 years ago and was very nervous! They gave me benadryl in case i had an allergic reaction, and it was wonderful... made me very sleepy and content. The infusion lasted about 3 hours, and i watched a movie and slept on and off throughout it. After, I was very hungry and still a little sleepy. My stomach felt crampy for a couple of days afterward due to the amount of medicine infused, but then I began to feel better! I didnt feel the full effect until after my second infusion, but you do notice a little difference after the first infusion. Don't worry- it can be a life saving drug if it works for you! Good luck!
-Jess
 
Kuwabara

Kuwabara

Thanks all for the support/advice etc!

Just one more query? Do you normally stay on some other kind of medication whilst on remicade? I'm on the last week of my Predisolone course but I still take Pentasa(Mesalzine- unsure of the American name) and Lansoprazole.
 
CanadianBella

CanadianBella

Right now Im being weened off of my medication, im currently taking Entocort(a steroid). Its not uncommon for people to stay on other medications as well as Remicade, and others are on Remi only. I actually might be put back on Pentasa as well as Remi!!
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
Kuwabara said:
Do you normally stay on some other kind of medication whilst on remicade?
Click to expand...
It seems that most of us do stay on something else, if that something else was somewhat working.
I weaned off of prednisone just as I was starting Remicade, and also started Imuran (azathioprine) at the same time. I have been taking pentasa for a few years, and still am.
I think my doc wanted me to stick with the pentasa in case the Remi didn't work. Or maybe to give it an extra boost, or that it works in different ways.
 
shazamataz

shazamataz

Heya James, I hope it goes well! I was surprised to hear you going on the Remi as I thought you had mildish Crohns? We only get it here in severe cases (and it may only be humira not remi) , but we are a bit behind the rest of the world when it comes to some things. Bring a book - apparantly it takes some time!

(((HUGS)))
 
shazamataz

shazamataz

Wow, I have to add this to your thread: We don't even have Remicade here! I've just been having a wee look up at Pharmac (who makes all the drug availability decisions in NZ). And we only get Humira as a last resort if things are severe and there is no option for surgery. Seems in the US they use it a lot. Gosh I hope I don't need it any time soon!

Back to you James - hope you feel well afterwards :)
 
Jennjenn

Jennjenn

:eek2: I hope it comes there soon for those in NZ who do need it...I tried Humira and it was not for me...That really limits choices there then because there are not a lot even where all meds are available to patients.
 
shazamataz

shazamataz

I know! I read in the paper just after I was diagnosed that Humira (called something like Amaldibub here) has JUST been approved for use in my area (it was already okay in other areas with different health boards). I guess you have to be really really sick to even be considered for it. And sounds like they would always do surgery first! What a backwards country we can be sometimes!
 
A

Angeleye005

Yah they were trying to get me on Humira, but I feel its to new so I said no. I read that most people get hair loss for the first 6 months and then it comes back, scary in my oppinon. Unfortunatly I have a bad case of crohns and been in the hospital twice for cysts because of it. Remicade didnt work for me, was on it for a year. Didnt take any pre-meds and didnt get any side effects. Just felt a little sick for two days the first two times I got it. I got high doses of it every 6 weeks. I hated sitting there for the 2hr infussion.
 
B

beth

Hope it's going okay James!

Adalimumab is what Humira is called here. Apparently, according to my GI consultant, these anti-TNF-alpha drugs are being used more often in general, and in less severe cases as the drugs are proving themselves to be pretty good with fewer side effects in clinical practise than expected.
 
Kuwabara

Kuwabara

Thanks guys - it was just a bit boring that's all. The Ward was full of folk talking about the weather etc. deciding what type of cold it was outside.

'Ooh I think its a bit frosty kinda of cold you know?'
'Its the kind of a bitter cold isnt it?
'Yes. Its the kind of cold where you really appreciate getting to your nice warm house'
'I'm glad I wore my scarf'....AND IT GOES ON.

Honestly if the drip machine had malfunctioned I'd would have been a happy chap - get me away from these morons!

Anyway can't complain. (well I just did). I felt kinda spaced out a bit - in a good way. I think that was just from sitting quietley for four hours - got into a kind of medidative state.

Next infusion in two weeks. I AM IN THE REMICADE CLUB. wow.

Thanks for all the advice/support again!

x
 
olumay

olumay

Hi everyone, i am getting my Remicade tomorrow and the best news is that my insurance pays for everything.
I have read that some people on it are having joint pain, anyone here experiencing that? i am not sure if the joing pain is from the Remicade, Crohn's or other meds thay are taking.
 
Jennjenn

Jennjenn

I have joint pain really bad Olumay> I was wondering how you were feeling from your last post the other night. I hope a little bit more :) I believe that my joint pain is from a mixture of the crohns and Remicade. I had some joint pain before the remicade and when I started it the joint pain got worse. Now they increased my dosage which also made the joint pain horrible. I was going to talk with my doctor about it.

I have also wondered how James is feeling since his Remicade.
 
Kuwabara

Kuwabara

Thanks for the concern guys. I feel absolutley fine - what tenderness and discomfort I had in my abdamon has gone.

I got 14 hours of sleep last night- it was immense.

Gonna be strutting some funky shapes tomorrow night too!Lock up your daughters, the love albatross is on the prowl!

Last day on predisolone tomorrow too.It just keeps on getting better and better.

Maybe tomorrow I'll wake up to World Peace.

(Shazz its the World Cup draw tomorrow - hopefully NZ and England will be in the same group)

x
 
Jennjenn

Jennjenn

Kuwabara said:
Thanks for the concern guys. I feel absolutley fine - what tenderness and discomfort I had in my abdamon has gone.

I got 14 hours of sleep last night- it was immense.

Gonna be strutting some funky shapes tomorrow night too!Lock up your daughters, the love albatross is on the prowl!

x
Click to expand...
I am glad that you are feeling well James. LOL about your comment about you being on the prowl!!!
 
Jennjenn

Jennjenn

Kuwabara said:
Thanks for the concern guys. I feel absolutley fine - what tenderness and discomfort I had in my abdamon has gone.

I got 14 hours of sleep last night- it was immense.

Gonna be strutting some funky shapes tomorrow night too!Lock up your daughters, the love albatross is on the prowl!

x
Click to expand...
I am glad that you are feeling well James. LOL about your comment about you being on the prowl!!!
 
Jennjenn

Jennjenn

Kuwabara said:
Thanks for the concern guys. I feel absolutley fine - what tenderness and discomfort I had in my abdamon has gone.

I got 14 hours of sleep last night- it was immense.

Gonna be strutting some funky shapes tomorrow night too!Lock up your daughters, the love albatross is on the prowl!

x
Click to expand...
I am glad that you are feeling well James. LOL about your comment about you being on the prowl tommorow night!!!
 
Kuwabara

Kuwabara

Love albatross,sex typhoon....its all good. I prefer albatross though - it conjures an image of an all consuming love wingspan.
 
shazamataz

shazamataz

LOL James, glad you are feeling good!
I am not much of a sports fan, but it is a bit exciting that NZ made it to world cup after about 25 years!. I expect they may well be out in the first round tho!
 
Kuwabara

Kuwabara

Well they had to beat the mighty Bahrain 1-0 to get through. I think they will just be hoping not to be the worst team in World Cup history.

The day NZ win the World Cup is the day the Devil ice skates to work. Still not bad for a country of 4 million
 
shazamataz

shazamataz

Hah, of COURSE they won't win. But good on them for trying. Will take the attention away from bloody rugby for a change!
 
olumay

olumay

Jennjenn said:
I have joint pain really bad Olumay> I was wondering how you were feeling from your last post the other night. I hope a little bit more :) I believe that my joint pain is from a mixture of the crohns and Remicade. I had some joint pain before the remicade and when I started it the joint pain got worse. Now they increased my dosage which also made the joint pain horrible. I was going to talk with my doctor about it.

I have also wondered how James is feeling since his Remicade.
Click to expand...
How are you doing, i am feeling okay and i am looking forward to my Remicade tomorrow. Will definately update you guys.
PS how are you doing?
 
Kuwabara

Kuwabara

Good luck with the remi. Take a good book with you. I feel great on it so far.

The nurses told me of one guy who came in and he was like a skeleton - in loads of pain and discomfort from his crohns. He had his remicade infusion and put on a stone(fourteen pounds) in just one week when he came back for his second infusion they didn't recognize him.His gut just healed and began to process his food so much better so he just ate and ate. Apparantly now this same guy can't speak highly enough of remicade because it gave him his life back.

Got my fingers crossed for you.

x
 
Jennjenn

Jennjenn

Honestly I will sound like I am venting if I say BAD DAY TODAY!! I have not been feeling well lately. I am on Remicade and feel that it helps a lot to a point but not to where I can function normally each day. I still am not going to accept that this is the way my life is going to be. I am due for another infusion next week but the joint pain is pretty unbearable lately. This morning which lead into the afternoon was very difficult to get out of bed. I got ready for my class today which took forever. I had to go to the bathroom sooo many times today. I have a dog that wants to be by my side all the time. He sleeps in my bed, lays down with me on the couch or in my bed if I am just resting. If I go to the kitchen to get something he follows, outside same thing if I am doing something in front of the house. The strange part is he follows me to the bathroom. When I first got sick and he would do this and sit close by me and he would stare at me. I just wound up placing his dog bed in the bathroom. He only uses it when I am in there and it seems to be a lot. ( i dont know why i mentioned that it just came to mind !!) I am so exhausted, dizzy, I feel like I cannot eat anymore without feeling pain and a lot of days having to go a lot, and my joints hurt a lot.
I wound up finally leaving the house today for my class. I get all the way there and get to the door of the class only to see a post that the class was cancelled. I was upset because it said my professor was sick today. I am also and an earlier email would have been nice so that I too could have stayed home and rested like I should be. I thought I would wait here a bit and I am in the computer lab at school now because the bathroom is right here and there is too much traffic now to be stuck in the car with bathroom urgency issues. That did not work out well for me with the ride home last week restaurant incident when I felt like this.
Sorry to go on and on :p
But I am glad to hear that you are feeling ok and hopefully the remicade will work well for you Olumay :)
 
Kuwabara

Kuwabara

Would you be able to swtich from remi to humira if possible? What other meds are you on? When was the best you've felt in terms of medication?Do you think the joint pain is bad especially because of the weather?

at least you're dog keeps you company, Jenn. I get a bit lonley been in the house on my own all the time.

Just out of interest what do you study? Maybe you could have a word with your teacher to ask him/her to email you next time?

Venting is good. Its theraputic.
 
Jennjenn

Jennjenn

I tried Humira out for a short time. It was not for me. As far as the remicade I see it has helped more than other things so I want to stick with it. I still have a lot of bad days but I feel that this is the only thing that is keeping me out of the hospital. With other meds I have tried I was constantly in and out of the hospital. With the pain and bad days and joint pain and everything else I think maybe I need to add in some other meds. I dont like to take pain meds but I am really considering it at this point if my doctor will let me for the joint pain. For the other problems I am having I need to find something to add onto the remicade that will help me more.
Oh I am greatful that I have my little boy (dog!) he does keep me company each day. I have to make it to the pet store Saturday. They are giving free pictures with Santa for the pets. I always wanted to have a picture of him with Santa lol !! Yes I am crazy! I hope I feel well enough to make it there on time.

I am going to school for my Masters in Mental Health Counseling. I had to change career choices because I was not able to work and stay healthy at the same time. I used to do lab work testing for clinical studies. I had to think of something that when I am sick I can still be employed. With this degree I will be able to get my license and be allowed to open up my own practice eventually. Then I can make my own hours based on how I am feeling. My professors assistant sent out the email too late. I was in route to school when it was sent.
 
Kuwabara

Kuwabara

Well I hope you figure out what you need. Surley there must be a thread on here for others who have similar issues with joint pain?

Yeah you've defo got to get a photo of your dog with Santa. Make sure you're dog wears a hat too - that will triple the comedy value!

Mental Health Counselling-very interesting and cool. Is it all counselling, no psychoanalysis or anything?
 
Jennjenn

Jennjenn

I dont think that I will be able to find a santa hat small enough for my boy!!!! He is a chihuahua.
I have been looking around for other possibilities for medications to add with the remicade. The ones I have tried so far have not made a difference. (meaning for the digestion issues).
For the other problems I am having I need to also find something to help with that.
 
Last edited:
You must log in or register to reply here.
Top