Infliximab???

[plebsta607]

i am 21 years old and was diagnosed with crohns disease in 2011.
i was put onto a 8week course of Prednisolone after diagnosis and then onto Azathioprine.
Azathioprine seemed to keep it at bay for a good 2 years...but unfortunately my body decided it didnt like that medication no more and i had to be taken off of it.
i was then put back onto Prednisolone to settle everything back down again and started on Mercaptopurine...but that really didn't agree with me so had to stop taking that too.
i was then taken off all medication for 2 months to see how my body reacted and as you can probably guess i suffered with a bad flare up!
am now once again back on the predisolone...i saw my consultant this morning and they are now looking into Infliximab being infused into my veins...can anyone give me some info on this?
they gave me leaflets and i have looked online (mistake haha) and have scared myself with all the talk of TB and other infections etc.
im not a fan of needles or hospitals so am pretty scared of the thought. but i cant go on living like this especially as i have a 18month old daughter to look after aswel....any help and info would be greatly recieved

 

[Lisa]

Welcome to the forum, there is a ton of information in the Remicade Forum, found here - http://www.crohnsforum.com/forumdisplay.php?f=58 - while the side effects can seem scary, please remember that the people who generally are doing well don't report that - except here, of course - where you will find both sides of the coin.....I'm on my 9th year of Remicade, and am hoping it continues to work for me!

 

[theOcean]

Hello there, I'm sorry you've had to go through this... I know how scary it can be to grapple with learning about all this medication for the first time.

If you failed both Azathioprine and Mercaptopurine, you could ask about Methotrexate since it's in the same class of medication but is different enough that you should hopefully not get a negative reaction to it. Azathioprine and Mercaptopurine are sister drugs, so it's not surprising that you had issues with them both if you had issues with one, already.

I've been on both Remicade and Humira, now. Remicade really isn't that bad, I promise! It's done by infusion, and the frequency usually starts for people at every eight weeks so you don't really need to think about it too much or too often, which is nice.

If you have any questions about any medications, let me know!

 

[plebsta607]

I'll have a look at that. Thank you.
I just don't know what to expect. I'm in England and I'm not sure if this site is English or not as have seen people from all over the world posting so not sure if it all works the same in different countries.
Any chance you can run through your days experience when you have the infusion?? Just so I can sort of settle my mind and have an idea of what is expected.
The doctors just tell me it's an infusion into my blood but not how the day runs as such

 

[theOcean]

It really was never too disruptive to my day! I would schedule my Remicade infusion for whenever was convenient, although sometimes I would have to leave class to get my infusion.

I would go to the clinic for my infusions, settle down into one of the comfortable chairs there, and wait for the nurse to prepare me for the IV. I would eventually be summoned into a small room where I would be weighed, and then I would be sat down to have the IV put in my arm. I would always get it in the inside of my elbow, since I have a very prominent vein there. You can always request where you want the IV put.

Once that was done, I would either be given Benadryl or steroids through the IV first. This was to prevent a potential allergic reaction. Then, I would be brought back to the initial room. The infusion would last 2 - 3 hours, for me. I would sometimes sleep, listen to music, read, or some people would even bring their laptops and work. They had small snacks and drinks available in case we ever needed them, and I always felt very comfortable and well-looked after.

Sometimes you can additionally get saline for a little bit after the infusion, or they may keep you a little bit longer for the first few infusions just to make sure you don't get adverse reactions. After that: you can just go home. So it's a small chunk out of your day, but it's not unpleasant -- I actually found it very relaxing when I got infusions.

Sometimes I would feel pleasantly tired after the infusion, and would have a little nap. Removing the IV, I forgot to mention, was also always painless for me.

I hope that helps! Also, yes: this forum is definitely global, though English-speaking. I'm from Canada, myself. I had my infusions done in a small clinic, and my American friend who gets Remicade gets them in-hospital. I'm not sure how it's administered in England.

 

[araceli]

Hello and welcome to the forum. My daughter has been on remicade for 2 years and no problems at all. She does not feel tired afterwards nor she has any side effects. She takes her computer, books and snacks to the clinic.

 

[plebsta607]

That's made me relax so much more lol. Thank you.
Is it just like a needle like you would have if having a blood test? But obviously stays connected to you for the duration of ye infusion?
I'm excited to start it as I really want to start feeling at least half healthy again and start living my life.

 

[theOcean]

Yeah, it's similar to a needle you get for a blood test, but has a small attachment so it can be left on longer and attached to an IV for the duration of the infusion. The worst part is just the initial prick of the needle, and then everything feels fine!

Biologics like Remicade really are incredible, so I hope it helps you get back to feeling healthy!

 

[dasJERMAN]

Like ocean stated the infusions really aren't too bad. If you're worried more about the prick than anything it shouldn't be too bad. You don't feel anything after the initial poke. In fact I am typing as I wait to be hooked up to my IV. Already had the "poke". Piece of cake

 

[inksane]

I have been on remicade since sept and have seen no side effects. I also have a huge fear of needles which is funny because I have tons of tattoos, but anyways getting an IV is no big deal. I think that blood draws are worse than IV. I used to get mine in the inside of my arm by the elbow but now I find it more comfortable to get it in my hand. I now look forward to infusion day because it is so much better than dealing with a bad flare.

 

[plebsta607]

It is just the actual prick I'm worried about now. But feeling so much more relaxed about it all. Thank you.
I'm actually looking forward to it if there's a chance it's gonna make me better lol