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Question about remicade

my little penguin

my little penguin

Moderator
Staff member
it can take up to 6 weeks from the start ( so third infusion) - some notice a difference after the first one.
FOr my son it took three infusions ( plus a few days) then he was golden.

good luck
 
ryansbronco

ryansbronco

About the 4th for me
Generally you'll be on a tapper of prednisone
So you should be in less pain while you start up remicade
 
P

purdueCrohns

I have been on remicade for 12 years. I saw improvement overnight. Some people require multiple treatments. When people start on remicade, they usually do 4 week intervals until a remission is obtained.

I would also make sure your doctor premeds you with benadryl/zyrtec. It can help make sure you don't develop an allergy to the med. Some doctors choose not to do this and I have no idea why since it is mentioned in the official doc from the manufacturer.

Edit:
It looks like they have changed the guidance on it to include different intervals to start. Either way, you'll be put on a shorter interval that becomes longer overtime. It'll become longer faster if you respond well.
 
P

purdueCrohns

Premed of tylenol and either benadryl or zyrtec can help with those sorts of things. I have gotten that for every infusion since 2001

The only thing I ever notice with remicade is sometimes I have what I call a "healing" pain the day after. It's nothing severe, but it is there sometimes.
 
P

purdueCrohns

I would also recommend making sure you are well hydrated as @ryan said. that'll also make it easier for them to get your IV in.

Hopefully these side effects decrease over time. If you're being put on remicade, you're probably pretty sick. Your body is going through a lot. As it heals up you'll feel better and better. I grew a foot after I went into my Remicade remission!

How is your Crohn's doing? You notice anything yet?
 
Lori1973

Lori1973

My 13 year old son is possibly starting remicade next week. Waiting on a blood draw. 6mP has failed. After you get a relief from symptoms are any of you able to then actually gain some weight? That is what we are most excited for, to be able to grow
 
Tesscorm

Tesscorm

Moderator
Staff member
Lori1973 - if remicade puts your son into remission, you should start seeing some weight gain. Malabsorption can often be an issue when remission hasn't been achieved.

Many kids are also on supplemental enteral nutrition. These shakes provide necessary nutrition and some of the formulas are broken down so that they are very easily digested/absorbed (less of the intestine is needed to absorb the nutrients). Examples of the 'regular' shakes which can provide added calories and nutrition would be Boost or Ensure; the more easily absorbed shakes would be Peptamin, Elemental.

You can find more info on EN under enteral nutrition as well as a thread in the Parents section, under Diets for kids (thread is called Kids on EN).

:)
 
Lori1973

Lori1973

Ok, I will ask about the peptamin and elenamil. We are waiting for the Prometheus test to come back to determine if Remicade is the right choice. Lots of waiting here this week....
 
Honey

Honey

Moderator
Staff member
Hi there,
Remicade infusions have worked for me. I go every 8 weeks to hospital for my treatment. I would like to know how long can you stay on this treatment and does anyone ever come off, having gone into remission?
:sign0085::panda-wave-t:
 
J

Jordinary

I have read on this forum stories of people have come off it having spent quite a long period in remission.
However if you then go into a flare once you are off and want to go back on remicade there is a much higher chance that your body has developed antibodies and remicade doesn't work/not as effective as it once was.

So if it is working for you, try and stick with it as long as you possibly can. :)
 
Honey

Honey

Moderator
Staff member
Hi there,
Thank you both for your reply. I worry about the long term effects of such powerful treatment on my body!! Yet, I KNOW that you cannot have any kind of life with untreated Crohns! I have been told I will be on Remicade infusions for life!!!
:panda::confused:
 
Honey

Honey

Moderator
Staff member
Hi there,
Sorry to hear you have been sick. Remember to drink a lot even if you are eating little, as keeping hydrated is important. I carry a bottle of flavoured water when I am out, as this stops nausea. I too, have my next Remicade infusion on Monday ,9th September. I hope Remicade works for you and you feel a lot better soon. Thinking of you.
:Flower::getwell::Flower:
 
V

vermonstor

Hi, I'm new to this website...I was on remicade for a little over a year. Taking Tylenol before an infusion definitely helps. Just make sure your doctor monitors your blood work etc because I had to stop the infusions because of drug induced lupis. (sorry, bad speller) Before that, it was really working well.
 
Honey

Honey

Moderator
Staff member
Hi there,
I was doing well on Remicade infusions, bloods back to normal and then.....ended up in hospital for three weeks with a lung infection, just before Christmas. I am still unwell and am now on steroids. Unfortunately, it affected my breathing unexpectedly. We all are individuals in our reaction to meds. It leaves your immune system vulnerable. I hope it works for you. You will be closely monitored for side effects. Best wishes.
 
RosieM

RosieM

I am starting remicade soon and am really hoping that it helps with fatigue. Has anyone here noticed a difference in energy level after starting remicade?
 
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