Remicade starts tomorrow - what can I expect?

[liverpoolcrohns]

Hi everyone,

Am new to the site - it was a revelation to me, I thought I was the only one going through this condition!
I've been diagnosed with crohns for 2 years now and have been down the steriod route several times and am currently on 150mg azathioprine and 4g pentasa but have had a really bad flare up over the last 8 weeks in my bowel which has lead my consultant starting me on remicade which begins tomorrow.
Not sure what to expect, trying to be positive!
Has anyone got any advice/stories about remicade?
Many thanks,

Phil

 

[bumble_bee]

I started Remicade last year after a flare that gave me an abscess. I had been med free for 6 years and had never really even heard of it before my doctor said he wanted me to go on it! I didn't have any reactions or anything, all went smoothly for me. I think after the first 2 doses I had a slight headache and was a bit tired after but I'm not even sure that was from the Remicade! It took a while to notice a difference in how I felt (I wasn't that bad off when I started though). Some people feel miraculously better after their first dose but it took me around 7 or so to notice any changes to how I was feeling and that was mainly just having normal BM's again!! Good luck!

 

[Keepingfaith]

My nurse & the nurses at the infusion clinic told me to drink a lot of water before each infusion(could be because of my infamous bad veins) to help speed up the procsess. I did notice that when I was getting my infusions, I felt better when I drank a lot of water. I didn't feel as drugged up due to the benedryl they usually give before.

I also reccomend taking a good book, blanket, cell phone, Ipod or anything for entertainment. It took about 4-6 hours everytime I had the infusion. At the infusion clinic, I had my own TV, recliner, and they supplied me with snacks/meals because it took so long.

Good luck! I got drug induced Lupus so I only got a few infusions before being immediately taken off. I hope it works for you! Many people consider it a 'miracle' drug!

 

[kllyeve]

If you being given IV Benedryl, make sure you have a ride home and are not driving as it is quite a sedative.

I didn't notive any side effects after the first infusion, but after 2 and 3 and 4 I had a bad headache and flu like sypmtoms for a couple of days. After #5 I had no symtpoms other than a lttle extra tired for a day or so.

After dose 2 I noticed improvements in my condition. After dose 4 my GI feels I hit remission as all my RLQ pain was gone.

I would really make sure you have a blanket as I find I get really cold during the infusion - the remicade is refrigerated and the IV solution is room temp.

Good Luck and I hope you feel better after a bit.

 

[Astra]

Hiya Liverpool
and welcome

Have you checked our sub forum on Infliximab/Remicade?

http://www.crohnsforum.com/forumdisplay.php?f=58

wishing you lotsa luck with your infusion, my friend has been on it 8 months and has got her life back!
Joan xxx

 

[Grumbletum]

Hey there
I'll second all of the above. I think in the UK they only give Benadryl if they think you might be having a skin reaction. I was only ever given a dose of steroid pre-infusion and Paracetamol during as it seemed to make my temperature go up. They'll take your temp and blood pressure every half hour. Infusions took 2 hours and stayed 2 hours after.
I actually found the whole thing quite relaxing.
After the second infusion I felt so much better. I had a colonoscopy 2 months after the third infusion which confirmed I was in remission, so no more infusions and so far so good.
Hope it does the trick for you too

 

[KazT17]

Hiya Liverpool, I am not far from you, are you going to Whiston? I had no prob with the infusion but also had no improvement either. How did it go? Xx

 

[Angrybird]

Hello and welcome to the forum, am glad you have decided to join Will be keeping fingers crossed that the Remi get things sorted for you, it did wonders for me for a few months until it also gave me drug induced Lupus. I know however that it has done a brilliant job for many here so definetly check out the Remi sub forum.

AB
xx

 

[liverpoolcrohns]

Thanks for all your replies, it really is reassuring to know I'm not alone with this crazy condition!
Everything went ok, just feeling a little tired but no other obvious effects so far - time will tell I suppose. Back for next infusion in 2 weeks.....

 

[David]

I'm glad it went ok

Welcome to the community by the way! We're here for you anytime you need us!