Advice For Newbie To Remicade?

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Silent Lucidity
Veteran Member

Date Joined Nov 2007
Total Posts : 625
   Posted 12/14/2007 5:46 PM (GMT -7)   
Hi there,I'm actually asking this question for a young lad at my place of work.I have UC,but Harry(the "young lad")has Crohns.I'm not overly sociable,so it's only recently I've befriended Harry and asked him about his disease(obviously there's a mutual understanding here).So anyhow,it turns out he's currently on Methotrexate,and will be having his first Remicade infusion on the 21st of December(boy,what a Christmas present!).

I was going to point Harry in the direction of this board(ie;give the address),but as he's only young(early twenties,as I say,only just got to know him)I'm a little worried he'll freak out at some of the info here.Please don't take offence guys,but I'm sure you understand how alarming some of this stuff sounds?

I really don't like to see people suffer,so I'd be grateful for any info you can provide.I gather that Remicade can cause some nausea?That would be a real bummer for Christmas!

All input is welcome,this is a great forum and I will direct Harry to it at some stage.Point being,he only started the suffering this year,I've had UC since 1995,there's not much that phases me now!Besides which,he's the second person I now know with Crohns.I'm not happy with the UC,and at times it really makes life difficult,but I really do feel for you guys.

Also(sorry to keep asking!),if anyone in the UK can provide links for workers rights with CD,I'd be very grateful.My place of work isn't very understanding,and I feel Harry has been treated very badly(like crap,if you'll pardon the pun and profanity!).

So there you go,as I say,all input is valued.Cheers guys :-)

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 12/14/2007 8:30 PM (GMT -7)   
I was on Remicade for a while. I did not experience any nausea. What kinda freaked me out was that it was administered in an oncology lab. Wasn't prepared for that sobering atmosphere even though I have had family experiences in large teaching hospital environments. Anyway, the primary reason they use an infusion room for Remecaid was because in "some" people it can cause a severe allergic reaction and that could require immediate emergency care. I never experienced any reactions either. I just built up antibodies to it and had to switch over to Humira. My drip usually took me 2 hours start to finish. I'd take a book or just nap through it most of the time. I liked to have mine done on Friday afternoons because some of the side effects are flu like symptoms..cold, low grade fever, body aches. If I had it done on Friday, usually the side effects were over with by Monday and I was human enough to work. I can understand you're hesitation in telling your friend about this sight just yet. He needs to have a better understanding of his disease and most of us hear have been like bloodhounds searching out information for ourselves. As you may or may not be aware...there are varying degrees of CD from individual to individual. Some cases are mild, some moderate to severe (me) and some severe. Your friend needs to be reassurred of this and that everyone responds to treatments differently. He may be young, however, rest assurred he needs to be educated about his options in his healthcare, because no one knows his body better than himself and waiting around for health professionals to let you in on the lastest & greatest news doesn't always happen. Be supportive of him also when he thinks he's run across a medical "cure all". There isn't one yet that I know of and some therapies can actually make you worse because of drug interactions and the like. Final peice of advice, tell him ALWAYS check behind the product(s) he's interested in trying and find out WHO is funding the source of information. There is a lot of not so crediable information out there and this site helps weed through the most wacked out ones just by us sharing our stories. Thanks for being the friend that you are and not to lessen your plight with UC but remember, while his disease may be somewhat related they are definetly two different diseases with different courses of therapy. Hopefully your explorations will support you both!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

Silent Lucidity
Veteran Member

Date Joined Nov 2007
Total Posts : 625
   Posted 12/15/2007 5:33 AM (GMT -7)   
Thanks for the reply Hilda.I understand what you mean about self education,I've done stacks of it on UC!I'll let him get started on the Remicade and then probably direct him to this site.

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 12/16/2007 11:12 AM (GMT -7)   
Hey there,
I'm from the UK and have some experience with the DDA (Disability Discrimination Act) and the workplace. It saved me my job!! I worked part time and I was protected by it after a year, theres varying lengths of time depending on job and type of employment etc. so if say you're in a probationary period your job won't necessarily be protected but reasonable adjustments are still supposed to be made for you by the employer.
At my job (I worked in a well known retail store) you were only 5% non-attendance before disciplinary procedures started. (I never really took off more than the odd day here and there, but as a part timer 1 day of the 2 I worked a week would account for a large percentage) I was facing disciplinary about non attendance so eeek job was on the line, when thankfully my mum who runs her own office told me about the DDA. A couple of calls by my manager to human resources told them that as I'd been employed for a over a year dismissal wasn't an option, and they couldn't even discipline me on non-attendance as they'd been aware from my first interview that I had Crohn's! And then I had to have an interview with HR so they could make any adjustments I may need. All i requested was to be able to keep bottled water on the shop floor as I had an issue with dehydration (that was to the companys benefit as well so I didn't have to keep leaving the floor to get a drink so they'd get more man hours from me!) and to be able to go the toilet as needed without a big deal being made of it and to wear non uniform black trousers as the style we had to wear sat quite high up and put pressure on my stomach where the Crohn's is so they let me wear ones of my choice which were lower cut.
With remicade, I'm on that also, I find the doctors in the UK tend to take the "suck it and see" approach, give one dose and see how you get on with it and will then give you another when symptoms return if it got you well. I found that good as first time round it took 2 years for the symptoms to return without having to have it repeatedly every 8 weeks which would have been unnecessary for me and unnecessary cost for the NHS as well! First time I had it, no side effects at all except a bit of tiredness followed by total hyperness the next day and the day after all physical signs of inflammation I'd had in my joints had gone and my stomach was pretty much 100% better, it worked so fast and so well.
The nacc website has some good leaflets you can download, so maybe he could print one off and give it to the employer to read? I know how hard it can be trying to explain it. heres a couple of links which may be useful regarding rights and employment. The key is declaration, if its declared at interview or on diagnosis then should be safe!

Forum Moderator

Date Joined Mar 2003
Total Posts : 10405
   Posted 12/16/2007 11:24 AM (GMT -7)   
I've been on Remicade for UC for nearly two years now. I've never had any side effects. My GI is in a large practice, and they have their own infusion center. Everyone there has IBD and is getting either Remicade or some investigational drug or other. It's very relaxing, with recliner chairs, music or television, and very knowledgable nurses.

The only adverse reactions I've observed in others were a couple of people developed a little fever and one got flushed and short of breath. In each case, they stopped the infusion, gave lots of IV fluid and observed. Two people were able to resume and complete their infusions with no problem, and the third opted not to finish hers. Three minor reactions out of a total of about 70 people I've been in that room with is a pretty low rate.

On the positive side, I began to feel better after the second infusion. I was started on the "induction" schedule, with infusions at 0, 2 and 6 weeks, then every 8 weeks thereafter. So far it's keeping me in good shape and able to live my life normally.

Good luck to your young friend, I hope Remicade works for him.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade. In remission since April, 2006. Remicade has been my wonder drug.

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