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I need advice/comments on Remicade/Humira

Hey guys, some of you here may know that I just recently tapered off of Prednisone. Well I just got my blood tests back and my hemoglobin is back down to 9. Anyways, I'm starting Remicade this Friday... any comments, concerns, advice for me? Also, if the Remicade takes, I'm going to switch to Humira so I can administer it at home... does anyone know anything about the Humira?

I look forward to hearing anything anyone has to say about either of the drugs. Thank you!

Katie
 
Sorry, I can't answer your question. But, I have one of my own. I do not know a lot about the different Crohn's drugs. I was wondering what the hemoglobin of 9 means in respect to taking Prednisone?

I am trying to learn about all of these differnet meds in case I end up using them.

Thank you.

D Bergy
 
humira is once every other week administered sub-cutaneous kinda like an insulin shot. it is also made out of human antibodies and has alot less chance of getting rejected as a foreign object "invading" your body. remicade is made from mouse proteins and tends to cause allergic reactions but it is controlled with low dose prednisone or benadryl.

there are alot of side effects listed but most common are minor stuff like headache and sleepiness. they still have to check your liver function like when you take 6-mp or methotrexate (usually you are on one anyways). from what i hear humira works really well.
 
O

old hat

Guest
katiesue1506 said:
Anyways, I'm starting Remicade this Friday... any comments, concerns, advice for me? Katie
Bring something to do like a Gameboy or a book to read. Something to occupy yourself with. It takes like 3 hours and is really, really boring.
 
Hi
I have been taking Remicade since it came to Ontario.
4-5 yrs. now. It works great for the first 4 weeks,then
the last 4 weeks I just have too suffer. It takes most of
the aches and pains away slows down the drainage from
my fistulas and less bathroom visits.All in all I have nothing
bad to say about the drug except I wish that I could get it
every month but, our government says no(it costs big bucks)
As far as side effects go you might feel your face going beet red
and your breathing slowing down but this only tends to happen
when the nurses forget to give you your pre meds. like Tylonal
and benydrol (sp).Then about 1/2 hr. later they start the remicade
dripping down very low then every 20 mins they take your temp.
and blood pressure and speed up the remicade so it drips a bit faster
each 20 mins. This is why it takes 2-3 hrs. through Iv. Most people
tend to fall asleep.I have had about 3 reactions all because they started
off too fast with the remicade infusion. Don't let me scare you though
You just tell them to turn off the infusion untill you start to breathe
normal and your face stops burning.I am just warning you this in case
it might happen to you then you know what to do.This docent happen
to everyone. Each and every person reacts different to the same meds
that most of us crohnies have been on.

As for the humria it did not agree with me. My liver levels hit the
roof and my bum cheeks got really sore after stabing myself with
the needle once a week.I mean I even had bruising on my poor
butt. Also felt very nauseated all the time and big time headaches.
Who knows it might work for you.
I was just giving you the heads up on the Remicade Katiesue1506
wasn't trying to scare you away from it. Also it may take 3-4 infusions
even before you or your body notices a change.
You might want to ask Ruth about the humria I am sure that it was one
of her posts that I was reading about humria. I could be wrong. Pm her.
Goodluck and let me know how you made out with the Remicade:)
 
Thanks so much guys, 'specially TNT... your post didn't scare me, I'm actually really excited about getting it done, and having a new prospect of getting better. And I have Harry Potter 6 ready for tomorrow. I'm nervous but really excited because I KNOW I'll get better on this... at least I keep telling myself this. Apparently the power of the mind is a strong one, and your subconscious doesn't know when you are telling yourself a lie or the truth, so I'll keep telling myself this is going to work and I won't have any side effects or allergic reactions.

D Bergy... the hemoglobin at a level of 9 is bad in respect to my anemia... when I was taking the prednisone it was supposed to bring down the inflammation and help me to heal the ulcers that I was losing blood from. But apparently I guess I didn't respond well to that treatment so I'm losing more blood now.

Well I'm sure I'll be back telling you how it went... :) talk to you all later!
 
I've tried both remicade and humira. I felt great for a while on both drugs, however both lost there effectiveness over time with me. I was on a study for humira, but was taken off after I had a flare up. Ever since I've been off of it my symptoms became worse to the point I opted for surgery. While in the end humira wasn't helping me enough to give me good quality of life, it was keeping things from getting worse (or at least that's what I believe).

I have a bit of a needle phobia, so humira was not fun for me. It was a test of will every time I had to give myself an injection.

Anyway, I hope it works well for you. I know it has helped a lot of people :)
 
H

HostileJava

Guest
I've been on remicade for about 3-4 months now. It seems to work, but I can't seem to last the full amount of time between treatments and I guess I need to wait till I've been on the regular 8 week interval for a while to see how I handle it. I get it done at the doc's office and it usually takes about 2.5 hours for me. I usually get a shot of both benydril and predinisone before they start the Remicade drip. I can instantly taste somthing horrible in my mouth and then feel sleepy for the rest of the day as soon as they inject the benydril. I usally take the day off from work and my mom volunteers to watch the kids so I can rest. After that I feel great up until about 2-5 days before the next treatment. I've fallen asleep during one treatment but usually end up playing video games or reading till it's over. It's kinda of awkward though with the IV in.
 
Everything went very well... and I can even eat my old foods again and I've been able to go out and exercise. I'm excited, but I go back this coming thursday. Humira keeps calling me to set things up, its just weird how much red tape getting Humira seems to have. I dunno just seems weird.
 
TNT(Dynomite) said:
Hi
I have been taking Remicade since it came to Ontario.
4-5 yrs. now. It works great for the first 4 weeks,then
the last 4 weeks I just have too suffer. It takes most of
the aches and pains away slows down the drainage from
my fistulas and less bathroom visits.All in all I have nothing
bad to say about the drug except I wish that I could get it
every month but, our government says no(it costs big bucks)
As far as side effects go you might feel your face going beet red
and your breathing slowing down but this only tends to happen
when the nurses forget to give you your pre meds. like Tylonal
and benydrol (sp).Then about 1/2 hr. later they start the remicade
dripping down very low then every 20 mins they take your temp.
and blood pressure and speed up the remicade so it drips a bit faster
each 20 mins. This is why it takes 2-3 hrs. through Iv. Most people
tend to fall asleep.I have had about 3 reactions all because they started
off too fast with the remicade infusion. Don't let me scare you though
You just tell them to turn off the infusion untill you start to breathe
normal and your face stops burning.I am just warning you this in case
it might happen to you then you know what to do.This docent happen
to everyone. Each and every person reacts different to the same meds
that most of us crohnies have been on.

As for the humria it did not agree with me. My liver levels hit the
roof and my bum cheeks got really sore after stabing myself with
the needle once a week.I mean I even had bruising on my poor
butt. Also felt very nauseated all the time and big time headaches.
Who knows it might work for you.
I was just giving you the heads up on the Remicade Katiesue1506
wasn't trying to scare you away from it. Also it may take 3-4 infusions
even before you or your body notices a change.
You might want to ask Ruth about the humria I am sure that it was one
of her posts that I was reading about humria. I could be wrong. Pm her.
Goodluck and let me know how you made out with the Remicade:)

Sorry I got mixed up with a different drug I think
that it was methotrexate that I had to use the
needle. They want me to try humira in a clinicle
study so my dr asked me if I would be interested
in humria.
But first I have to stop taking Remicade for
3 months prior to the study.
My Dr. told me yesterday that humria is a
new drug in Canada.That they just started
doing studies here in Canada.

Figures aye we (us Canadians)are always the last
to find out about new drugs available in Canada.

Anyhow sorry about the mistake on the different
drugs. Im glad I caught my mistake. Im forgetful
blame it on the drugs. LOL
Sorry:eek2:
 
I

Ilysha

Guest
Glad it went well...

Hi Katie,
I'm glad the Remicade went well for you. I too have done very well on it.

Is your doctor ok with the idea of switching to humira after only one or two remicade doses? I'm curious to know how your transition works as I'm thinking of doing the same thing.

Keep us posted!

Best,
Ilysha
 
Oh yeah, he wanted to start me on Humira as soon as possible, mostly becuase it's new for his office. He only has three patients(myself included) that are being set up to use Humira. I think he's pushing it so that he himself can get acquainted with it. I'll keep everyone posted on my progress when I start the Humira as a couple of people have told me they are interested in hearing how it goes.
 
W

wwwchachi

Guest
I have lot of experience with Humira and Remicade...I have had (personally) great luck with Humira....not so much with Remicade. I blog all of my injections, etc, here.
 

Kev

Senior Member
Hey Katiesue.. Good luck and god bless. Have you considered possibly doing a diary on the Humira process? I think a lot of folks here would be very interested

Just a thought...
 
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