Going for Infliximab. Need advice

[Lily24]

Hi all,

My doc has just forced me to go into Infliximab because my conditioon is going from bad to worst and the medicines are not helping me. I have bad pains, bloody diarhea (sometimes), very frequent motion, can't eat properly due to pain and diarhea and lost a lot of weight. My first injection will be on the 9th of Dec. I'm feeling really scared and hope those of you who have gone thru can gv me some advise on how this works and will it reduce all my symptoms? I'm so tired each day for having lots of pain and no sleep at all. I'm just so down that I feel that i'm no use to anyone and suffering the pain is really intolerable. Can't remember the days that I've not cried out of pain. Do pls share with me you experience in Infliximab and how it has helped you guys to improve. Thank you very much.

Regards,
Lily

 

[katiesue1506]

I am currently on Remicade (Infliximab)

No one can really tell you whether it will reduce all your symptoms, you may have an allergic reaction to it. But if it does work for you, it will be a significant help.

They do give you Benedryl and Tylenol before the infusion to reduce any reactions and they are ready with steroids or epinephrine for if you have an allergic reaction.

I know it sounds like a big step, but its really nothing to worry about. Its actually a very boring process. Basically they hook you up to and IV and then you sit there for 3 hours while they pump in the Infliximab. They do take your temperature and blood pressure every 15 minutes to make sure you are staying stable.

Hopefully it works for you! Good luck!

 

[soupdragon69]

Hiya Lily,

Are you in the UK? Infliximab tends to be used by those in the UK more and Remicade by those in the US. Just thinking out loud here..

Either way. The drug works well for many folk. As I posted on another thread it took 3 infusions for me to start to feel better. My GI said that most folk feel better after the first one or two.

You are obviously under immense pressure at the minute Lily and desperately need relief. Yes some of the meds we take can be scarey but if it gives you a decent quality of life and its the kind of disease you cant stick your head in the sand and ignore because it blatantly wont let you then go for it honey!

Some folk get very tired with it and others feel full of fizz.

Plan to rest the day of your first one. Make sure you have a stress free evening planned.

Take something to read and some music.

Ask for blankets or pillows to make you comfy too.

Keep posting here we will always listen too!!

Let us know how you get on honey. My next infusion is 17th Nov. I have been on it since May 07 and it has helped me alot.

Hang in there. Things will get better!

((hugs))

 

[Lom]

Hi Lily,
I felt a vast improvement pretty much the day after my first infusion (although they isn't necessarily the case for everyone).I had my second 'loading dose' on Nov 4th (this was 2 weeks after my original infusion) and I am due my next infusion on Dec 2nd. I believe that after this my infusions will be every 8 weeks.
I currently have had no problems during the infusion and had a big improvement in terms of symptoms since the first infusion (touch wood!)

Hope it works well for you.

 

[amor151]

what happened to lom was the same for me as well. the next day i felt great and 2 days after i was almost 100% symptom free, i couldnt believe it. im currently on schedule to have my 4th infusion on the 24th of december (great christmas present) and ive not felt this good since being diagnosed. there is a chance it may not work for you but if it does you should expect good results almost straight away. the infusion itself is easy the worst bit is having the canuler (sorry not a clue how to spell it) inserted into your arm but it just feels like having a blood test.

really hope it works.

 

[kromom1]

Hey Lily - I'm getting ready to start Remicade too, maybe next week. Sounds like there have been a lot of positive results. Hopefully it will work just as well and as fast for us!! Good luck to you!

Lisa

 

[Han Shan]

I've been on Remicade since April. It is the only prescription medicine I take at the moment and it has been a big help for me. Thanks to the medicine and some alternative self-treatments, I'm in a symptom free remission at the moment.

However, I didn't reach this point until after having about 3-4 infusions. My own doses, if I remember correctly, were scheduled at 0, 2, 4, and then every 8 weeks. The procedure is easy as pie and I've never had any side effects from it.

 

[My Butt Hurts]

I just had my first infusion 2 days ago, so I don't have much to tell, but yeah - it wasn't a big deal. A little poke in the arm, and sit for 3 hours. It was kind of nice leaving work early, husband picking up the kids. I even fell asleep for a second in the chair. Some people have had very good results for years, and some have felt better even that day. Good luck, Dec 9th is a ways away still. Hang on, and I hope you feel SO much better!!
Let us know!

 

[Lily24]

Thanks a lot for sharing. I feel a bit better and stronger to go and get it as soon as possible. Anyway, just curious, once you all have the injection, what kind of food can be taken? Is it depends on what type of food you wanna take or is there some specific food that have to be eaten? My doc just called and told me that without a CT Scan he can't start me on Infliximab. But the hospital machine is down fro 3 mths and there is a long queue for the emergency unit CT machine. He suggested to go private but it costs really a lot. Still very confused and don't know what to do.(

 

[RHOV]

there are no food regulations while on remicade. eat whatever you want! you can eat before, during, or after your infusions. food won't interfere with the medication.