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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade Club Support Group


 
11-12-2008, 09:55 PM   #1
RHOV
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Join Date: Oct 2007
Remicade Club Support Group

About this Support Group

It seems like a bunch of people are just starting Remicade and looking for advice. I'm starting to lose track of everyone in the IV league! I thought it would be helpful for everyone on Remicade to make themselves known and share their experiences in one nice consolidated thread.

I've been on Remicade since January, every 6-7 weeks at a little over 10 mL per kilo. My infusions take for friggin' ever, but it kicks in within 1-3 days. And i like missing school.

I <3 Remicade.

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11-12-2008, 09:56 PM   #2
My Tummy Hurts
 
Oooo, I am looking forward to seeing people in this thread, I have not started yet but getting ready to. I'm nervous!!
11-12-2008, 10:04 PM   #3
katiesue1506
Senior Member
 
Join Date: Nov 2006
MEE! I was on it in May of 07 and had 2 infusions and then moved to Humira... I just started it again 2 weeks ago... I go for my next loading dose on Saturday.
11-12-2008, 10:54 PM   #4
My Butt Hurts
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YAY!! A CLUB! A CLUB!!!!
I started 2 days ago.
11-13-2008, 12:17 AM   #5
soupdragon69
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Join Date: Dec 2006
Me too!

Have been on Remicade since May 07. Initially 8wkly but settled at 6wkly since Dec 07 at 5mg/kg but because I have put weight on with steroids for other health issues I have not been getting the full benefit. GI is adjusting it now!!

OOh a club - when I was in primary school I belonged to the "Tufty Club". It was a Squirrel called Tufty who taught us how to cross the road! LOL

Feel like a kid again! Bring it on!!!
__________________
Jan

IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
11-13-2008, 10:22 AM   #6
kromom1
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Join Date: Jul 2008

My Support Groups:
RHOV you are so creative - I love the "IV league" reference!!! Great idea for a thread - I will be joining soon, too - maybe next week. To My Tummy Hurts, I am a little nervous too, but from what I've read so far on other Remicade-related threads, it looks like it will be a piece of cake!! I'm sure we will be fine and hopefully will get good results!

Lisa
11-13-2008, 11:38 AM   #7
katiesue1506
Senior Member
 
Join Date: Nov 2006
Hey guys... I wanted to make you aware of a resource... my doctor enrolled me in this rebate program by Centacor and here's the website for it http://www.centocoraccessone.com/

If you qualify for the program they will provide up to $400 dollars in a rebate for the out of pocket costs you pay for Remicade. They also offer patient assistance like sending you appointment reminder cards, and my lady is going to call me after my infusions to see how they go.

Kinda cool.
11-13-2008, 12:53 PM   #8
CDStinks
New Member
 
Join Date: Aug 2008
Started my treatments In June 08 - had my last loading dose about 5 weeks ago
Next one is in 3 weeks (8 week intervals)
This stuff it amazing - It started working within hours of my first dose & i now feel like there is nothing wrong with me (remission???)
i secretly like the 3 hour treatments - i get to sleep in & miss a 1/2 a day of work & no one bothers me....not too bad.
Im sure it helps that the transfusion center is a short walk from my apartment!

Just wanted to share my love for Remicade!!
And of course Join the Club!
11-13-2008, 04:37 PM   #9
kromom1
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Well I'll be an official member next week. My insurance company approved me for Remicade, and my first infusion is November 20th. Katiesue, thanks for that information. I'm going to check it out.

Lisa
11-13-2008, 06:37 PM   #10
RHOV
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when are everyone else's next infusions?

so far the schedule is:
Nov 15: katiesue
Nov 20: kromom
Dec 1: RHOV

it would be cool if some of us were getting our infusions at the same time!
11-13-2008, 08:38 PM   #11
My Butt Hurts
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Mine is Nov. 24th.
11-13-2008, 10:19 PM   #12
Jeff D.
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Join Date: Apr 2006
I'm on it but I don't think it's working for me as after the past three treatments I'm in the same boat as I was previously. It seems the only thing that helps me is dilation of my rectum so we'll see.
11-14-2008, 09:18 AM   #13
Han Shan
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Join Date: May 2008
I've been on it since April. I go in for my next treatment on Nov. 19. So far it's been working great for me. It did take about 3-4 infusions before I started to feel as consistently good as I do now. There was a point where I believed it wasn't working, but once I made it over that hump I found myself in remission.

According to a recently published article (my apologies if this has been covered before in this forum):

"Conventional wisdom about the treatment of Crohn's disease is being turned on its head by a new study.

Traditionally, patients diagnosed with the devastating inflammatory bowel disease are treated with a "step-up" approach, a series of drugs given sequentially as their health deteriorates.

First, they get corticosteroids to control symptoms like abdominal pain and bloody diarrhea. They are then prescribed a powerful immune-suppressing drug, which prepares them for a third medication, an antibody that curbs the inflammation at the root of the disease.

But a group of European and Canadian researchers decided to see what would happen if they treated newly diagnosed Crohn's patients immediately with a combination of an immune-suppressing drug, azathioprine, and an antibody, infliximab, simultaneously. Patients were only treated with steroids if they had symptoms.

In the study, published in today's edition of The Lancet, this "step-down" approach proved to be markedly more effective.

At six months, 60 per cent of patients treated with this method were in remission, compared with 36 per cent in the step-up group.

After a year, 62 per cent of the step-down patients were in remission from Crohn's, compared with 42 per cent of the other group. But the numbers in the latter group rose only because so many had progressed to taking infliximab.

"The conventional approach was far inferior," said Brian Feagan, director of clinical trials at the Robarts Research Institute of the University of Western Ontario in London, Ont., and co-author of the study."

Source: The Globe and Mail (Canada), February 22, 2008 Friday
11-14-2008, 09:37 AM   #14
Lom
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Had 2 infusions, started feeling better almost straight after the first one. I to secretly enjoy going (they give me a nice dinner to eat whilst the IV is happening!). Next infusion is on Dec 2nd.
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11-14-2008, 11:54 AM   #15
CDStinks
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My next treatment is Dec 4!
11-14-2008, 06:32 PM   #16
RHOV
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Join Date: Oct 2007
Nov 15: katiesue
Nov 19: Han Shan
Nov 20: kromom
Nov 24: MBH
Dec 1: RHOV
Dec 2: Lom
Dec 4: CDStinks

there's a different person every day!
11-15-2008, 02:25 AM   #17
BWS1982
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Guess I got kicked out of the club, Remicade didn't do much at all, or it was negligible. You guys should all have a global meetup, get you all on the same schedule if possible (I know some are 4, 6, and 8 weeks though), so the forum can be on the same schedule, like women in a household or office menstruating together.

Lol Jan, a squirrel taught you to cross the road, I don't know about UK squirrels, but I'd never take lessons on road safety from the ones out here.
__________________


-diagnosed with Crohn's Disease in Sept. 2006, currently 28 years old

"Chuck Norris can kill two stones with one bird."

"Men with Spartan lives, simple in their creature comforts, if only to allow for the complexity of their passions." -The X-Files, S4
11-15-2008, 10:05 AM   #18
My Butt Hurts
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Awww - poor Benson wants to be part of the club.
Once a member - always a member, I think.
You've paid your club dues.

Good visual on the squirrel.
11-15-2008, 03:59 PM   #19
katiesue1506
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Join Date: Nov 2006
Well I had my Remi done today. Everything went fine. Vitals stayed normal. I got the freaked out nurse again and she managed to screw my IV up a little and get blood everywhere. Also kept trying to suck bubbles outta my line with a syringe instead of running off the saline into a trash can till they were outta the lines. Sucked blood into my lines again.

I moved my appt times for next time since I found out that she only works weekends in the mornings.
11-15-2008, 04:19 PM   #20
TammySue62
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Join Date: Nov 2006
Location: hamilton, Ontario

My Support Groups:
I first started about 7 yrs ago then stopped about a year ago .Then had the humira injections.that drug didnt get along with me So now I am back on the remicade for the second time.
I am at the highest dose you can get.
As most of you now it goes by your weight. I was at 3 vials but my GI has doubled the dose to 6 vials per every 5 weeks.
Its great for the first 2-3 weeks then I gradually go down hill from there.
Just counting the days until my next infusion.
__________________
TAMMY
------------------------

HAVE HAD CROHN'S DISEASE FOR 30 YEARS AND STILL GOIN
11-17-2008, 03:55 PM   #21
kromom1
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Join Date: Jul 2008

My Support Groups:
To everyone on Remicade, are you on other medications, too? My doc wants me to stay on Imuran with the Remicade. I will still be on pred when I start the Remi, too, but will hopefully be off of it for good a couple of weeks later, if the Remi works.

Lisa
11-17-2008, 04:19 PM   #22
CDStinks
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Join Date: Aug 2008
i am on 6MP as well as Lilada. I am doing the new step-down approach - so Remicade & 6MP were given to me early on in the game. I think the plan is to stay on remicade for about 6 months when the 6MP should be working fully & then take me off the Remicade as well as the Lialds & hopefully will be able to sustain with 6MP only
so 3 more months (2 treatments) of remicade to go - cross your fingers for me!
11-17-2008, 04:43 PM   #23
My Butt Hurts
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Yeah, I have been on pentasa for at least a year or so, and on Imuran for just over a month I think. I'm on 5 mg of pred too, down from 40 in August, but need to stop soon.
11-17-2008, 04:48 PM   #24
drew_wymore
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Boo I want to be part of the club =( I guess we'll have to start the Humira club in response!
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11-17-2008, 04:54 PM   #25
My Butt Hurts
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I'll get you in!!!
You don't actually have to take Remi to be in the club, just think about taking it, have a sponsor, or have a cyber-girlfriend who's in it.
11-17-2008, 06:29 PM   #26
kromom1
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My fingers are crossed for you CDStinks - good luck!

Lisa
11-17-2008, 09:31 PM   #27
TammySue62
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Join Date: Nov 2006
Location: hamilton, Ontario

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kimberlie said:
Tammysue, It is interesting that they put you back on. Mike was told they could not. I am glad to hear they can.

My GI was not sure If I could at first,but because I have tried every med possible for crohns and him being chief of GI's they accepted me back. i was a first in his books also. That is second time around with his help.
11-18-2008, 08:06 AM   #28
guest15
 
Join Date: Jul 2008

My Support Groups:
My boyfriend will have his first Remicade infusion the 20th. He's super nervous about it and has been on Pentasa for the past 7 years but the inflammation has reached severe levels and his gastro insists he start this new class of drug. I believe that his gastro is going to keep him on the Pentasa while recieving the Remicade.

Last year he had an abscess and developed septicemia, which he just barely survived. After a hospital stay where the staff collapsed a lung trying to insert a main line and then developing a huge thrombosis after they put a line into his neck which required an even longer hospital stay, he has been terrified of going back into the hospital and is suffering severe anxiety at the idea of going in for this infusion!

His condition is terrible, he hasn't really ever recovered from the septicemia incident; he's lost 15kg and doesn't sleep at all. Sometimes he goes for weeks on just 1.5 hours a night as he's up with pain most of the night. He's also one of those driven perfectionists that refuses to miss a day of work and gets up at 5:30 to eat, take meds, use toilet, etc so that he can get through his morning pain before leaving for work. He's a musician and music teacher part-time, and an insurance adjuster for a hospital part-time, so sometimes his days run until 9pm with only a 15 or 30 minute break thrown in there. It's ridiculous and he's become aware that he cannot continue to abuse himself like this and must slow down. So that much is good. And accepting the Remicade treatment is also a very big, good sign.

So. I'm going with him to his first treatment. How have most of you felt during and post-infusion. I want to be as supportive as possible - he's said he's only continuing treatment because he sees a future between the two of us. He's just totally exhausted and so sick that he can't see things clearly, I think, and that's why he was ready to give up and stop treating the disease.

Whew, it felt good to get all of that out! It's so hard to see him constantly suffering and in such pain. It's also hard because I can't just leave him alone and sleep while he's suffering at night, so I've been steadily becoming more and more exhausted as well. [not that he wants me to stay up with him, i just find it hard to leave him like that!]

Bearly in mind how anxious he is, I wanted to ask you all if there's anything I can do to reassure him, any anecdotal Remicade evidence that I can pass on that might help to make it easier.
11-18-2008, 09:26 AM   #29
RHOV
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Join Date: Oct 2007
Remicade usually goes pretty smoothly, but if you're with him during the infusion, you can help him out by getting him food/water or books and magazines while he is tethered to the IV pump. It can be a little awkward trying to unplug the machine and I sometimes tangle the cords, so it's nice to have someone help with it. Infusions are boring, so a fun conversation or game will help it go faster and take his mind off things (yours too!). It might be a good idea for you to be the "designated driver" if you aren't already, because many people have reported that Remicade makes them tired. The first infusion can be a little nerve-wracking too.

You shouldn't have anything to worry about! I hope that he sees some fast results from Remicade. i'm sure he knows that you're there to support him through everything, and he will appreciate having you along.
11-18-2008, 02:17 PM   #30
soupdragon69
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I had my infusion today. My GI has upped the dose and with getting over recent infection I am kinda tired tonight. Have nothing planned tomorrow so will have a good lie in I think.

Benson! Laughing at my squirrel!! ;-) Will have you know Tufty was VERY sensible *huff*

LolaB, You are doing fantastic supporting him. Try to do a little planning as you are. Nothing planned for the rest of the day. Tell him he MUST rest after it. Its a weird feeling watching it going in the first time. Take some music that he likes with headphones and something else to do/read etc to help pass the time. Ask the staff for a blanket and pillow (my favourites as I get pampered and have a snooze).

Tell him I have found it has helped improve my health all round dramatically and without it would be where he is now!!!

Thinking of you..

Last edited by soupdragon69; 11-18-2008 at 02:21 PM.
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