Infliximab, Adalimumab, or hide behind the couch?

[swallowedafly]

Hello all

This is the first time I have been on this forum and I am sooooo glad to find out there are people who know the extreme test of having crohn's. I am relieved to find out that there are people who are just as paranoid as me when it comes to thinking they have other illnesses - the world was a simpler place before google.

Anyway, I saw my consultant yesterday after having an MRI scan (5 years with crohn's and it was my first one...?) and it turns out my ileum is riddled. So much so that surgery isn't really an option as that would require whipping the whole thing out.

As for treatment, I just came off azathioprine which I had been on for a year after it gave me shingles......in the eye and on my face, hooray! The doc said he is putting me forward for two drugs: infliximab and adalimumab. The first being infusion, the second self-injecting.

My only symptom at the moment is severe pain, thankfully no diarrhoea - but the idea with these drugs is to prevent the disease getting worse, rather than relieving symptoms (as is usually the case).

My doc referred to these drugs as supposed 'wonder' drugs. Does anyone have any experience of these, what do you think? Should I go for one, or none and hope things don't get worse? The doc is going to phone me soon and ask what I want to do.... I have no idea. Any help would be great.

Thank you!

 

[kenny]

"and it turns out my ileum is riddled. So much so that surgery isn't really an option as that would require whipping the whole thing out.
"
That would be apx 7 feet of small intestine removed. Not unheard of but certainly uncommon.

 

[Crohn's 35]

Hi there, and Welcome to the forum! I have been on both but not at the same time. If you have a reaction you wont know which one caused the problem. Remicade has mouse protein, whilst Humira self injecting has human proteins. I had an allergic reaction to the Remicade by the 3rd infusion and a year later tried Humira and it was great at first but short lived and didnt hold the ground for my pains. I agree they are risky drugs, but if you can get your inflammation down in the intestines, and you do have to have surgery (eventually) they may not have to take out as much. I have had a total of approx 2ft of intestine (60cm). Surgery is a last resort and comes back quicker.

All drugs have to label all problems in the clinical trials and we are like snowflakes no two alike and what affected me may NOT affect you at all. Having said that I dunno about two biologics, from what I have seen even on this forum, no one has had both. I would try the Remicade (Inflixamab) first, and if no relief after 8 weeks then I would try both, kinda risky in my opinion. I am a long time Crohnie who avoids meds as much as possible but YOU have to do what you need to do for a quality of life. This disease debilitating and frustrating. I wish you luck and please keep us updated, so much information here about both drugs, reading them can help you decide which way to go.

Glad you are here, sorry you have to be here, but lots of friendly advice and support here!!!

 

[Peaches]

Hey Pen - I think she means she has to decide *which one* she wants to start - not both at the same time

I have been on Remicade for over 6 years and it has been a wonder drug for me. Aside from an annoying skin rash I developed about 6 months ago - I have had no problems with this medication and I am realizing that I'm pretty darn close to being in remission with it.

So - the decision for you may be - do you want to have to sit in a clinic every 8 weeks for about 4 hours to get an infusion (infliximab) or do you want to give yourself a shot every other week (Humira).

I have heard that the Remicade (infliximab) might be a bit more effective- but that is just anecdotal.

 

[swallowedafly]

Thank you for all your help so far, it's good to get some human response.

Yeah, I don't know if I made it clear, the doc is saying infliximab (Remicade) OR adalimumab (Humira).

I was thinking purely from a convenience perspective that maybe self-injecting might be easier as I'm always travelling and moving from place to place, though I've never injected anything before.

Another thing the doc mentioned was that these drugs tend to just stop working after a while and no-one knows why, but he said hopefully they'll have another treatment available by then..... has anyone heard of these drugs suddenly not working, and if so how long do they tend to work for?

Thanks again!

(oh i'm a male, 24 by the way!)

 

[farm]

infliximab=Remicade. Wonder drug for me thus far.
Love the name by the way.

 

[CrohnsHobo]

Another thing the doc mentioned was that these drugs tend to just stop working after a while and no-one knows why, but he said hopefully they'll have another treatment available by then..... has anyone heard of these drugs suddenly not working, and if so how long do they tend to work for?

Thanks again!

Remicade stopped working for me. I took Remicade for close to four years. Started on 1 infusion every 8 weeks, then 6 weeks, then 4 weeks and then stopped them all together. Times between infusions decreased because I would get to week 6 and then feel crappy, then week 4, until finally I would feel good for about a week then nothing.

I just started on Humira and Methotrexate Injections two weeks ago. Hoping I can get back into remission this time and go on some maintenance drugs/nothing.

 

[imisspopcorn]

I'm loving Remicade....check out the Remicade club thread....many different perspectives documented in there....I hope you get some relief, no matter what you choose....

:welcome:....

 

[Crohn's 35]

Thanks for the clear up, I wondered if I was mistaken.

BTW Swallowedafly, I have that stupid song on my head all day thanks!

"I know and old lady who swallowed a fly.... ugh

 

[MINI Cooper]

Hide behind the couch!
:tongue:

Remicade is probably a good option, as long as you take into
consideration the possible side effects. Having this disease is all
about weighing the risks. Doctors can suggest all they want, but
the decisions ultimately come down to you. It is your body and you
know it best.

Good luck!

 

[Pirate]

I had the same concerns about both. After reading up on both treatments and by asking questions here most of my fears were eased and I went with the Remicade.
I had my 2nd treatment this morning and all went well again. No matter what treatment you decide there are always chances of side effects.

Good luck with which ever one you go to.

 

[swallowedafly]

Thanks again everyone! It's good to hear lots of different perspectives. It doesn't seem as if many people taken humira and so i guess there isn't so much information on it.

I'm starting to realise that crohn's is all about the unknown and risk. Might get better, might get worse, might go away completely, might have side effects, might have none. I really wish I was a betting man, I don't even play the lottery!

....now you see why I liked the idea of hiding behind the couch......

 

[beth]

If we're voting, like, then I'll go for Adalimumab... which is what I'm on. I was given the choice between the two and I didn't fancy the mouse bit of infliximab. But... who knows. Pick one and do it!

(I guess you're in the UK...)

 

[swallowedafly]

Hi beth, yeah i'm in the uk.

Ok, here's a thought - what if I didn't take either?

This is where I am with the disease: I get periods of severe abdominal pain if I eat a normal diet, which can last from between a couple of minutes to perhaps and hour, on and off. I don't have any functional problems with my bowels. I'm not losing weight. I rarely need to take days off work due to crohn's. If the pain gets too bad I go on an elemental diet (modulen) which I really don't mind, and all pain goes. However, the doc says that my ileum is extensively affected by inflamation, and there is much narrowing. I also suspect I will be put back on azathioprine once my shingles are 100% gone.

Given this, is it worth risking swallowing a spider?

 

[beth]

I see where you are coming from - you don't have much in the way of symptoms, and what you do get you can control, so why take nasty drugs?

Doesn't sound to me like you are controlling the disease - you still get pain. Pain == bad things. Narrowing of the terminal ileum is serious stuff. You really really don't want that, you don't want to have to go down the road of surgery because once you do that you end up in surgery again. And again. And again. The ileum is responsible for so many things you don't want to mess with if you can help it.
Adalimumab and Infliximab are very effective, safe - well as safe as anything else, probably much safer than abdominal surgery, and may buy you some years before those strictures need removing.

Have you asked about the alternatives... what would your gastroenterologist do in your circumstances?

 

[Kuwabara]

Remicade is awesome. I put on 14KG between my first and third infusions.Being nearly 6"5 though it was all welcome!Hope it works out for you

 

[pain in the butt]

Welcome Hope your shingles clear up fast for you. Good Luck on your desision on which meds. Keep us posted on how things are going.

 

[butt-eze]

I tried Remicade back in 2006. I had to stop after some potential life threatening side effects. I started Humira in 2008. I am satisfied so far. I don't like giving myself shots but I'd say crohn's symptoms are worse.

I do get a lot of sinus infections but that is going to happen with any immune suppressing drug.

 

[pain in the butt]

I have been on Remicade for over 6 years and it has been a wonder drug for me. Aside from an annoying skin rash I developed about 6 months ago - I have had no problems with this medication and I am realizing that I'm pretty darn close to being in remission with it.


Peaches I'm a bit confussed if your on remicade for so long yet your still not in remission? Wondering because I thought remission would be having no more than 3 to four bm and no pain .maybe I don't understand remission. hopeing for it myself and I know everyone is diffferent, but can it really take some people 6 years or maybe I miss understand?

 

[krahsdnal]

I was on remicade for about 4 years and held everything in check up to the last 4 mos, when CD got worse and had to have the resection. AS far as which one, I would still go with the infusion, not the self shots. One main reason is that you are in a medical facility incase there are any issues. I figure i could handle 2-3 hours every other month

 

[DanM]

I am on Humira. The self injection is not that bad. The pen is an autoinjector type. You pinch your leg or stomach skin, place the pen against it, and hit the trigger. It will shoot a small needle and administer the dose. It takes about 10-15 seconds for the shot and 2 minutes of prep every two weeks for me. Abbot also has a co-insurance plan for Humira users to help with the co pay for the first year or so. I am also on 6-MP, which is roughly the same azathioprine. According to my doc, a study is about to be released showing that a mixture of anti-TNF drugs and 6-MP or azathioprine is the most effective for Crohns. Humira does great at treating the disease and the 6-MP helps and reduces your body's chance for rejection of the anti-TNF.

3 bits

Dan