First Infliximab infusion tomorrow.

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

M

marcus

Joined
Sep 24, 2010
Messages
36
Hi, my brother will be having his first infusion tomorrow after trying all the usual things like liquid diet, prednisolone on his second course, azathioprine, and some others, but unfortunately he is still having lots of BM's with blood, he was due to have it on the 6 th of april, but the doctors brought it forward because of his symptoms.

Now i was worried about him taking prednisolone, but now even more so with Infliximab as i have heard the same as most of you probably have about the side effects, and especially because he is a young male teen.

The doctor wants him to continue taking azathioprine from what i gather is not the norm could someone tell me if we should ask the doctors if we should stop taking it or not, he's currently on 125 mg azathioprine and tapering prenisolone 15 mg and 5 mg on alternate days, then 10 mg 0 alternate days then 5 mg 0 alternate days then stopping.

Is Infliximab in general good at treating crohn's, and should we go ahead with the infusion as my mom is worrying so badly, she just wants the best for my brother.
 
I'm waiting for my first infusion myself and I had all kinds of thoughts about taking this medication.

IN the end it comes down to what other choice do we really have? I'm really tired of having so much problems that at this point I'm ready to try anything.

So all this to say... have you tried everything else that you are not worried about? If yes then this is the next step. I should also state that with everyting I read about it it's worth the side effects. seems to work well on most people.

Good luck to your brother.
 
I went into remission after about 4 days. I am totally serious. Some people it takes more time, but it still works great.

If the remicade works great he can choose to stop taking azathioprine if he wants to. But only do that if he is guaranteed to have funding for remicade for a long time. My doctor says if funding is uncertain and you have to wait longer than 8 weeks for your next infusion, the aza can prevent you from developing antibodies to the remicade. Which is a good thing, because once you get antibodies to remicade, you cant take it anymore. I have great coverage and my husband has a stable job, so I felt great to come off the aza once I knew remicade was working for me well.

Even though the risk is higher in young men it is still really low. I just eat healthy, excercise and do things I know prevent cancer, like drink green tea. I figure, i used to smoke for my own selfish pleasure, at least the remicade helps me feel better. Also, active crohns is also a cancer risk. Its a risk for colon and rectal cancer. So either way, he has a cancer risk.

Good luck, I hope he has fantastic results, and can just go on with his life already.
 
im 19 and i was recently in the same boat. i have my third infusion tomorrow. it def has helped when nothing else was able to, and supposdly it works great for damage that is low down like the sigmoid and rectum, where mine mainly it. i had tons of blood and tons of perianal pain, and probably a fistula but thank god most of the symptoms cleared up within a week. still though, i have more formed but "fuzzy" stools, go more than once a day and still have urgency and random pain and bloating. i am not in remission which sucks, but we have to take it a day at a time. i was also on pred when i started the remicade in the hospital
 
So we have not long got back from hospital and it all went well apart from a little waiting around because my brother has not had his TB jab, and also not had chicken pox, so more opinions were needed, but in the end he was given the Infliximab.

It took around two and a half hours, plus an extra couple of hours monitoring after the infusion. He said he felt okay, so i just hope this works for him, we have to go back for his second infusion in two weeks.
 
I feel bad i haven't been on for a while, but just to update my brother has had three infusions now and he is doing really good, he has improved so much he has now gone back to school after missing most of this year, but is hoping to catch up as much as he can today was his first day back, and his friends and the school has been great.

He started to feel better around a week after his first infusion, he was having up to eight BM's a day sometimes with blood, but now it's like one or two normal BM's a day no blood or anything, so i hope he can get back to doing things he likes doing.
 
I have my second remicade infusion a week from tomorrow.....I just dropped from 70! To 40 mg of pred as well as flagyl, etc.....I've had baad uc problems since 2007, this is the best 6 days I've had in years! I too read all the scary warnings about tb and cancer....we can probably thank the lawyers and current culture for that but I think those are so rare....I would love to keep all the organs and such that god put inside me and this is my last resort most likely, and it seems to be working! I'm a remicade believer so far, I take each day as it comes, I expect no miracles but so far it's better by far than it was!!! Go for it and good luck, have your mom read success stories, not just warnings. I did!
 
I start my first infusion this Thursday. Still on 40mg of prednisone and 4gms of Pentasa. Just had my second resection March 1st 2011, and then discovered skip area with whole other section higher up in small bowel affected. So now on to remicade. Good luck with yours, and I'm ready now. This forum has been a God send for me. I am not as anxious anymore after reading all of the threads. This has done more for me than any Doctors consult or web page ever could. Thanks everyone.
 
Hi everyone it seems i'm only posting on here everytime my brother has an infusion, which i feel bad about as i get alot of information off the forum and i would like to contribute to it also, he has just had his fourth infusion today and is still doing well with school and sports so i'm happy for him.

We can now go straight home after the infusion which is nice we just keep an eye on him for a few hours, but he feels okay afterwards. He even stoped over at a friends house and that shows how much he has improved, because i don't think he would have felt confident enough when he was going to the toilet alot.

And i want to say thanks for all of the kind words.
 
Thanks for the update! It's so great to hear that all is going well. Long may it continue!

:mademyday:

Dusty. xxx
 
Hello, it's been a long time since my last post, but I'm glad to say my brother is still doing very well. He has normal BM's and does what he likes socially. As I said before he missed a lot of school and really had too much work to catch up, but saying that he is still taking his exams at the moment with the rest of his classmates. Nothing amazing is expected in terms of results, but he can always retake if he so wishes. He is starting a carpentry course at college in September.

The doctors are pleased with my brothers progress, so much so they are now thinking of stopping his Infliximab infusions as he can only be in what is described as remission. They want him to finish all his exams first though as it's a stressful time for him as it is.

I have to apologise for not keeping my posts regular. I guess it's true when people say no news is good news. I think people, when they are just getting on with life sometimes stop posting. That is what I did anyway. It's wrong really because this site helped me so much reading from other peoples experiences. So thank you to everyone who has kind words to say and to those that share with others how they are dealing with Crohn's. This is a great site.
 
That's wonderful about your brother!

You are wonderful for taking the time to understand your brother's condition and do whatever you can to help him. All of us IBD'ers need a family member like you for support!

I hope the remission is long lasting!
 
Marcus - after my first three Remicade treatments my doctor dropped the maintenance dose of Pentase - similar to what a maintentance dose of azathioprine is supposed to do, the Remicade is taking it's place now.

SarahAnne - I know all about kidney stones so I sympathize for your pain and discomfort while dealing with Crohns too.

Randy
 
My doc also will drop my maintainance Methotrexate (once I'm up to full strength Remi...after 3rd dose).

Have you experienced the extra energy while on Remi? Or is it just a short-lived first dose reaction?
 
The steroid certainly helps, but after two maintenance doses I am in much better overall shape stamina wise. I have played pickup basketball a couple times and I certainly could not do that before remacaid treatment.
 
I am so glad to hear all the positive stories!

I hope you all do well with whatever treatment
you are using! And keep posting the positive!
(sometimes we dont get much of that!)

Lauren
:dance:
:congratualtions:
 

Similar threads

F
Tapering prednisone
Replies
8
Views
2K
Floss
F
C
Latest lab results, what questions should I be asking?
Replies
24
Views
4K
Maya142
Maya142
C
Your thoughts, please. 10 yr old.
Replies
14
Views
1K
Crohns dad
C
C
Jaw swelling,
Replies
9
Views
1K
asadmom
A
S
Two year old with symptoms
Replies
22
Views
3K
J100
J

Latest posts

Back
Top