Starting on remicade next week!

[vickyhunter]

Hi everyone, I've been in flare for 11 months and after being on steroids 4 times this year my doctor told me we need to treat my crohn's more aggressively or else I'll end up so damaged I have to have a bag (at 19, this is just not an option for me!)
So he wants to admit me next friday to start me on remicade.
I'm currently on steroids (tapering, on 20mg at the moment) and azathioprine 100mg. I'll be stopping aza when I go on remicade, though.

I'm a mix of emotions really, I'm so happy something is getting done as I've pretty much been on and off steroids for this past year and been getting very worried as they've lost their effectiveness, but I'm also sad as I was in remission for 6 years on aza and thought it would last forever..how things change!

I'd appreciate any advice/experiences anyone has to offer, this is the first new crohn's treatment I've tried in 6 years so I'm a bit scared.

I have a few questions:
1. how long does it take for the remicade to take effect?
2. how do you feel after the infusions?
3. how frequently are the first few infusions? (I know they're 6-8 weeks when it's settled down)
4. any idea why my doctor wants to admit me rather than just doing an outpatients appointment? is this normal?
5. how long do the infusions take?

Thank you for reading and thanks SO much if you answer any questions, I'm so grateful!
xxxxxx

 

[stephanie]

hi Vicky! We are in a very similar situation, I have just recently been diagnosed with Crohn's, have just gotten of prednisone since being on it in July, I am currently on aza (100mg) now and starting remicaide for the first time this friday! I am nervous but also excited...but I am worried about potential side effects? I am 20 years old and wondering how it is going to effect my busy life as a full time student?

 

[stephanie]

oh also, my remicaide is starting friday, then I have to get another treatment two weeks later, then six weeks later, and then every 8 weeks

 

[lizzy]

hiya! I'm in the same position! I am starting on 5th December! I have had it before although I can't remember how long it took before I felt better which is annoying! I am having mine firstly two weeks after, then 4 weeks after that.

I remember I was sleepy after getting it done but I think that might have been stress related as I had to get to an out of the way part of London on the bus everytime which was tiring/stressful. I remember sometimes we would watch films in the room while having it, its a great place for people watching!

If anyone actually remembers how long it took to affect them I'd love to know too. My brain is a sieve.

Lizzy

 

[lizzy]

wow we should start a club! I am currently on 125mg azathiprine and I am 23!

 

[vickyhunter]

ahah this is freaky how similar we all are!

Stephanie, from what I've read people get tired after the infusions - but eventually they'll be every 8 weeks so I'd rather be tired for a few days every 8 weeks than dependant on steroids like I am now. As for the other side effects, I just want a life where I don't have to constantly think about crohn's so for me they're worth it!

lizzy - did you get buses after your infusion? I was actually thinking about this before aha! I didn't know if it would be allowed? Like for some things you have to arrange lifts and stuff.

I just hope it works!!!
xxxxxx

 

[Mr Bedfordshire]

Hi there,

I've had two infusions,so here's my experience (hope it helps?)


1) its impossible to tell as everyone is different-it could be after the first,second,third or unfortunately not at all.

2) I've had 2 infusions now and for me I just felt tired after both infusions,but not bad enough to warrant not going to work. After my first infusion the day after I noticed that I went to the loo a bit more, but the day after it went back to normal. Again,everyone is different.

3) my consultant put me on 2 weekly infusions-I've had. 2 and after the 2nd infusion,it's 4 weeks after that,then every 8 weeks for me.

4) maybe its just being over cautious as its a very powerful drug, but when they say 'admit' they may just mean 'for the day' .

5) The two infusions I've had I was at the hospital for 5 hrs start to finish and drove myself home each time.

I still don't feel any different what so ever, but please please please don't be disheartened by that as it 'has' worked for sooo many others!!

I've got my third infusion in 2 weeks time and I've got everything crossed that it actually does something!!!

 

[vickyhunter]

Thanks for answering all my questions! Like you said it will be different for everyone, I understand that.

My consultant said he would probably admit me for 1-3 days depending, but then kind of trailed off and I wasn't really taking it in as everything was being discussed so fast and I was a bit shocked aha so I can't remember the fine details of what was discussed, just the important stuff!

Thanks for your advice all the same
xxxx

 

[Mr Bedfordshire]

Just stay positive,search on here for people's success stories, and further info as this forum and it's members are better than any doctor,consultant or book as we're pretty much all in the same boat and need to help each other out the best we can:kiss:

 

[lizzy]

I did get buses! No one told me not too! Are you thinking because it might lower your immune system its not a good idea to hang out on a dirty bus? It honestly never occured to me. I wish I'd had an excuse to get a lift though.

 

[vickyhunter]

I was thinking more if you're tired they might want you to get home safely and get a lift. Like when I recently had my endoscopy I had to get a lift as you are sedated (obviously much more than just being tire from an infusion, though, but I thought it might fall under the same category!)

And thanks Mr Bedfordshire, I'm feeling really positive about remicade considering how successful it has been for some people - I'm really hoping it works for me and I can get back to normal
xxxx

 

[Mr Bedfordshire]

I was thinking more if you're tired they might want you to get home safely and get a lift. Like when I recently had my endoscopy I had to get a lift as you are sedated (obviously much more than just being tire from an infusion, though, but I thought it might fall under the same category!)

And thanks Mr Bedfordshire, I'm feeling really positive about remicade considering how successful it has been for some people - I'm really hoping it works for me and I can get back to normal
xxxx

That's the spirit! Just hope it starts working for me as I'm counting down the days til infusion no.3 as I've pretty much told myself 'IF' it's going to work,it'll be after the 3rd infusion,just in time to enjoy Xmas and then get back down the gym!

 

[Ian]

Hi Vicky,

Sorry to hear it's come to this after you went so long with no problems, but I really hope it works wonders for you and quickly .

1. how long does it take for the remicade to take effect?
Different for everyone, but when I took it I'd been in hospital for a week for a bad flare before I started it. Had my fist infusion in a Thursday evening. Stopped bleeding on Friday. Was let home on Sunday. It really can be that quick!
2. how do you feel after the infusions?
Other having than a slightly warm face at some point during the infusions (due to slightly increased temperature but still within normal/safe range), I felt nothing whatsoever. Could've been saline for all I knew!
3. how frequently are the first few infusions? (I know they're 6-8 weeks when it's settled down)
After your first one, the next two will probably be at weeks 2 and 6, and then they'll be every 2 months/8 weeks.
4. any idea why my doctor wants to admit me rather than just doing an outpatients appointment? is this normal?
I had my first in hospital but I was already admitted for a flare. I don't know why he wants to do this in your case.
5. how long do the infusions take?
I think mine took about 3 hours and then I was monitored for an hour or so afterwards to check I wasn't going to have a bad reaction (which I didn't). For my outpatient ones, I arrived at 1pm and left arounf 5-5.30pm.

Hope that helps! And I know I'm like a dog with a bone with this topic, but I think you should question your doc's decision to discontinue Aza. It's true that combination therapy increases the cancer risk (but as you know we're talking a tiny increase compared to the risk normal drug-free people face), but combo therapy is also thought to be more successful than one or the other alone, and it also helps to prevent/slow down the production of antibodies that may cause you to lose response/have a reaction to the medication at some point. Ultimately it's his decision and I'm sure he has his reasons but you might just want to clarify them.

How's Uni going? I really hope the Remicade allows you to go back to a normal student life soon, good luck with it! x

 

[hannah-rose]

I just wanted to echo some of the things Ian said to hopefully make you feel confident about Remicade:

I've had two infusions so far and I've noticed no side effects whatsoever, either during or after the infusions. As Ian said, could be saline! The only effect I've noticed is that it's the only thing which is healing my body, and the healing I've experienced in just three weeks of starting the first treatment is impressive.

I hope you're one of us lucky ones for whom Remicade is a wonderfully painless treatment with the only effect being that you feel better

Hannah x

 

[hannah-rose]

Ps Mr Bedfordshire I really hope Infliximab starts working for you after the third infusion, good luck with it all. Do you go to Bedford Hospital? Or is there a hospital in Dunstable?

 

[Mr Bedfordshire]

Ps Mr Bedfordshire I really hope Infliximab starts working for you after the third infusion, good luck with it all. Do you go to Bedford Hospital? Or is there a hospital in Dunstable?

thanks - so do i:angry-banghead:

I go to the luton and dunstable hospital in Luton, just off the motorway. Im under Gastro Consultant 'Matthew Johnson' who i must say is very good.

 

[vickyhunter]

wow Ian thanks for answering all the questions, your answers are so helpful and reassuring!
And I did ask him about staying on aza but he said I'd be coming off it when I start on remicade, but I will ask again!

hannah-rose, really glad you've responded so well to it, I hope the same happens for me!

I just want to get started! I'll start over thinking everything if this week doesn't hurry up
xxxx

 

[stephanie]

Just had my first infusion! it wasn't bad, it helped bringing movies and magazines, it made the time go by a lot faster! it made me REALLY sleepy, my mom came with and she drove, I am really happy she joined me because I dont think I could have driven back home. But it was not as scary as I thought it was going to be! hopefully it will help me and I can start feeling better!

 

[vickyhunter]

Really glad to hear everything went okay stephanie
How long were you there? my mum is going to come with me too aha, I'd be so bored otherwise! xxxxxx

 

[lizzy]

Hiya! Glad it was ok! Its nice to get to bottom of the feeling tired thing. I now know: it wasnt the bus it happens to everyone! Good Luck with yours Vicky!

 

[stephanie]

I was there for about 3 hours, yes I couldn't imagine being there alone, it would be so boring! good luck with yours! its nice to be able to talk to people who understand what you are going through, and yes lizzy it seems like it happens to everyone!

 

[vickyhunter]

Hey, hope everyone is doing okay!
So I went to my appointment on Friday and my doctors suggested it'd be best for me to go on humira instead of remicade. With me being at uni and stuff they thought it'd be easier for me to self inject rather than go to hospitals for infusions. So with that, I'm now going on humira!
Good luck to you all and thank you for all the advice, I hope to not have to reconsider medication in the future but you never know so I'll be retaining all the remicade information
xxxx

 

[Ian]

Pleased to see an update, I was just thinking of you. Glad you're making progress either way. Humira is definitely more convenient (make sure one of your flatmates doesn't accidentally unplug the fridge at the end of term like mine did haha - luckily I had no meds in there at the time). I hope it works wonders for you! When do you do your loading doses?