Results of endoscopies

[CDJ]

My son had his endoscopies today and it shows inflammation in his small bowel, which is why he has been losing so much weight.
The MRI he is having tomorrow should confirm this as well. They are also going to do a chest x ray.

The consultant is already talking of starting him on Infliximab in a couple of weeks, which seems a very scary leap from Pentasa, and not good with a needle phobic son.

What should I expect with Infliximab, how often will he have to have it, how long will he be on it for ??? I have read that each infusion can take 2 hours, is this correct? This will mean that I am going to have to take a lot of time off work, which won't go down well :thumbdown:

I feel like I am starting out with 100's of questions again the same as I did when he was first diagnosed with crohns

 

[Jmrogers4]

I may be joining the same boat ride. MRE is being scheduled for my son as they suspect stricturing in small bowel and remicade seems to be the best medicine to combat that. From what I understand there is initial loading dose, then dose at 2 weeks, then 4, then hopefully every 6-8 weeks.
Yes on the length of time as far as I understand because they monitor them during and for an amount of time after. There are quite a few whose children are on remicade and I'm sure they will be along shortly to give a more detailed answer.

 

[Crohn's Mom]

Hi CDJ

I have no personal experience with Remicade, but here is a link to our treatment club here where other parents have shared their experiences with their child who is on it.

http://http://www.crohnsforum.com/showthread.php?t=44907

Also you may want to have a look around the Remicade sub-forum ~ lots of helpful information there as well !

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

Best of luck and I hope the infusions go well

 

[Tink572]

Sorry to hear about the inflammation.

My son has been on Remicade for a little over a year now. He gets it every 8 weeks, but there are others who have it at shorter intervals. The first few visits took longer as they infused it slower and watched him afterwards for a reaction, total time was about 4 hours. Now though, we are out in just under 3 hours.

The nurses in the infusion clinic are great about giving the IV. My son has never had a problem with them hurting him. He did have one nurse who spilled the vial of blood she had just drawn because she was being careless, but the IV was started and they didn't have to poke him again.

My understanding is that his doctor will keep him on it as long as it is working for him.

It is tough taking off work for it every 8 weeks, in addition to other appointments, but hopefully your employer will be as understanding as mine is.

 

[Sascot]

Sorry but no experience with infliximab, just wanted to wish you luck if it does go ahead. Hope it works really well and gets the inflammation under control.

 

[Clash]

My son is on Remicade along with methotrexate. He did his loading doses a 0, 2 weeks, and at 6 weeks then they were spread out to every 8 weeks. He gets blood work before every infusion. His only side effect has been fatigue for an hour or so after the infusion. The infusion last a little over 2.5 hours for him, they also pre-medicate with benedryl so that could be the reason for his fatigue.

We have had to up his dose and shorten his schedule and just recently add Methotrexate. Although Remicade has worked like a charm leaving him with 0 symptoms after infusion he doesn't seem to be able to make it out past 3.5/4 weeks before the symptoms return. This last infusion as worked as well so he is going to have a scope tomorrow and it may be back to the drawing board.

Remicade works fantastically for many who utilize and although it hasn't given us full relief I'm a little sad that we may have to kick it to the curb because for the few weeks after each infusion that it does work, its a life changer!

Good luck!

 

[my little penguin]

DS is on remicade.
Although two hours seems alot.
He is like the kid he was before he got sick.
Factor in blood draws every two weeks for Imuran or 6-mp and we save time by only going once every 6-8 weeks.
Some Gi docs will have there checkup during the infusion so you don't have to come in for a seperate office visit.
DS is not at that point yet.
Good luck

 

[CarolinAlaska]

Sorry to hear the news. I'd be full of questions too. I'm sure it will be fine and I hope he responds very well to it.

 

[CDJ]

Thank you all for your support, this site has made a huge difference to me knowing their are others there that understand this disease.

Will the Infliximab get this flare up under control, or just while the infusion is in the body? What I mean is does the effect wear off between each infusion so that the symptoms return each time, or will he get much better than he is at the moment?

 

[CarolinAlaska]

The idea is to get the flare up under control and to not have symptoms between infusions. When the infusions don't last until the next one there is a problem... Hopefully that won't be the case for your son.

 

[Bubbly]

Wishing you well today.

My son also have inflammation, cameras couldnt get through small bowel fully, and still awaiting all the results in detail, plus he had another blood test which had to be sent away to diff hospital to check how well Azza is working! We are still waiting....

The treatment you mentioned above i havent heard of, yet, i am going to do some research myself on various options.

If it works and gives your son the relief and to be able to get back to doing the things he should be doing, and i quite understand all the questions, lots and lots and i hope you get all the answers.

Let us all know how things work out x

 

[Dexky]

Thank you all for your support, this site has made a huge difference to me knowing their are others there that understand this disease.

Will the Infliximab get this flare up under control, or just while the infusion is in the body? What I mean is does the effect wear off between each infusion so that the symptoms return each time, or will he get much better than he is at the moment?

Like Clash said, they can alter the schedule some and add meds to try to tweak his results. Good luck!