Remicade v Humira

[forum contributor]

Hi all ~
Going to be starting either Remicade or Humira very soon (taking Lialda now, but not working, so being taken off it) and would like input from both sides.
Remicade scares me because I've read that it can cause cancer.
Humira scares me because I'm not sure I can inject myself.
Can we get a discussion going for both meds so I can get a better idea on both experiences?
I really appreciate it!

 

[danman]

I've been on both.

Remicide (infliximab on this side of the Atlantic) was the best drug I've ever been on. I had 1 and half wonderful years on it.
Don't get taken in by the cancer scare, if you think this way about everything, you wouldn't leave the house.
There is more chance of getting knocked down and killed in a car accident.

I was on Humira for 4 years.
Injecting yourself is a big barrier. wimped out for 3 years, I got a local nurse to inject me. But then my dose was change to every week, so I tried my self.
I used the pen for myself, and found it fine, considering I have a massive fear of needles, this was quite a challenge.

i think it was either Drew or Colt that posted a video of himself on youtube, injecting Humira. It's very useful.

Also try the search for Humira threads, they spring up every few weeks, so there are lots of info on them.
Also, read the Remicide Club thread from the start, there's lots of good info in there too..... long as you bypass the chitter/chatter..... (MBH? )

 

[My Butt Hurts]

WHAT THAT WINK FOR DANMAN???
It's was Drew who posted a vid of himself injecting Humira.:tongue:
(wink back atcha!)

I have been on both too.
Humira kicked in on day 6, and it was a GREAT 4 months of remission. Unfortunately it slowly stopped working (like everything else I've been on)
I never injected it myself, but I'm sure once you do it it's easy.
Watch the video at www.myhumira.com I found it helpful (though others on here said it was stupid.)

Remicade is working VERY well for me, and I have been on it since November. it didn't start to work as quickly for me as the Humira, but so far so good.
I'm on Imuran and Pentasa too, and was coming off prednisone as I started.

Re: cancer - that studies say that people were diagnosed with cancer WHILE taking the drug. that doesn't mean they got it FROM the drug. EVERYthing that happens has to be reported. People on the placebo got cancer too.

 

[kello82]

Re: cancer - that studies say that people were diagnosed with cancer WHILE taking the drug. that doesn't mean they got it FROM the drug. EVERYthing that happens has to be reported. People on the placebo got cancer too.

i was gonna say the exact same thing!
santos--this is really important to remember what mbh just said there. anything that happens to a patient WHILE theyre taking the drug must be put in the warning so that they can cover their butts from lawsuits. so just cause someone reports that they have a headache every day while on a med, doesnt mean that they didnt have a headache every day before that too! make sense? the same thing applies to the more serious "side effects"

ive also been on both drugs.
wow should we start a remicade AND humira club? lol!

i did the remi first and it was the best few years ive had with crohns. never had remission, but that was the closest yet. i was also on methotrexate and i believe that it was the combo of the two meds that worked for me. the remi slowly lost effectiveness over time.
then i was on humria for about a year and it didnt seem to do anything at all. i increased frequncy of the dose, but it never kicked in.
when i was taking it, i always did the shots in my thigh. i used the spring loaded pen, but i never did it myself. mom and dad did it for me. im not afraid of needles, but for some reason the injections into my leg (methotrex was the same) really bothered me and it was like a mental block. if i had done it myself i would be sitting there for hours trying to bring myself to do it.

like dan said, you can go to a nurse once weekly and just have her do it, that might work out really well. i was going to have that arrangment when i was shopping for colleges, we had to look into who would do the shots for me and all the nurses are completely capable.

good luck! if you have more questions ask away

 

[katiesue1506]

Been on both... Remicade and then Humira and Humira ran out and then Remicade again and its slowly wearing off again.

The Humira isn't so bad to inject yourself and I'm one of those people who said Id never be able to do it. The trick is to trick yourself... tell yourself that you are going to do it when the clock turns to (insert random time) and instead of waiting till then, just do it... I had to trick myself to get it done or else I'd sit there for half hours at a time trying to do it.

 

[terps02]

Santos61198, I'm in the same boat as you. Pentasa isn't cutting it, so my GI wants me to go on Remicade. My GI referred me to a Crohn's and Remicade "expert" in the Baltimore, MD area. This doc has more experience with Remicade than anyone in the country (heard that from multiple sources). I just had an appt Friday, and learned the following:

1) There are 1.35 million people on Remicade (that number may include the past) for one reason or another
2) Of the small number of people that got Lymphoma, every single one of them was on a Imuran or 6-MP type drug at the same time. This doctor told me that the tides were turning and that studies are showing that the Imuran/6-MP could be linked to the cancer more than the Remicade. Doc also mentioned that there is no scientific evidence showing Remicade or Imuran to have directly caused cancer. Like someone else mentioned, many of these people could have gotten the cancer if they were on the meds or not. Who knows? Bottom line is there is a small number in the numerator and a big number in the denominator.
3) Doc told me to make sure my local GI keeps a close eye on my blood work.
4) Doc also stressed the importance to keeping a schedule and not deviating. Doc said if 8 weeks between doses is "not enough", then increase the dosage and keep 8 week interval.
5) Since I have developed a fistula, my Crohn's is automatically considered "aggressive" and that Remicade is a "no-brainer" as far as doctor recommendation.

 

[forum contributor]

Thanks, guys.
I'm just really nervous... I've only had to do IV's for dehydration (re: Remicade) and have never done injections (re: Humira).

 

[daisy_dueller]

I don't know first hand, but my uncle has ver severe CD, and he tried remicade, it worked for a while, then stopped...he's been on humira now for 6 or 7 months, and it's working beautifully for him! He wasn't too keen on the self-injections at first, but he's getting better!

 

[CD68]

No way I can inject myself. No way. Nurse ordered me Humira in the form of an epi pen and I get my husband to do it. He still has to hold me down. And honestly I don't even feel the needle, not even a little bit, but I do feel the burn of the medicine as it starts to spread out under the skin--you have to keep the needle in you for about ten seconds. It sounds neurotic of me to need someone else to pull the trigger but that's just the way it goes. I reckon I could place the pen and get everything ready and have one of my kids do it, actually.