HealingWell
Search Close Search
☰

Humira or Remicade? How did you go?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/31/2008 12:00 AM (GMT 0)
Hey all,

I've been on the Abatacept trial, and it has worked for me - off prednisone and all, but my GI wants to take me off the trial as the open label dose is too low to be effective in my case.

He has said he wants to put me onto Humira or Remicade and I want to know what results people have had from each please.

How did it go?

What side effects did you experience?

How quick did it work?
Posted 1/31/2008 1:17 AM (GMT 0)
Hi there! I for one would love any feedback about this too. I just had a colonoscopy today and my doctor determined that Remicade is no longer working for me. I started in June of 2007...it's now losing it's effectiveness. My question would be if they are similar, why should I assume that Humira could work for me? I am just not sure. I did respond well to Remicade for two months then that was it really. I did not encounter any side effects from the Remicade either so I figure I could tolerate the Humira. I just don't know if I want to go through all of this again to find that it's not going to work after 2 months either. I understand that Remicade is made up of both mouse and human protein and Humira is made up of just human protein. (if I am wrong on this please advise)
I am curious but you know, it's been a long time for me...many years of trial and error.
Can't wait to hear what anyone has to say about this.
Steph
Posted 1/31/2008 2:08 AM (GMT 0)
From what I understand, Remicade is based on a mouse protein and Humira is a human protein. So you're less likely to develop antibodies to Humira. Humira has not yet been okayed for UC patients, but it has been okayed for Crohns. While Humira can be prescribed for UC off-label, depending on your insurance it may or may not be an easy matter.

Remicade is given as an infusion over the course of 2-3 hours, recommended infusion intervals are eight weeks, although some people go sooner, I am on a six week interval now because it only works for me that long. Humira is self-injected, I believe every two weeks.

Meesh
Posted 1/31/2008 2:11 AM (GMT 0)
I was already on Remicade, but Humira wouldn't have been a choice for me because my insurance doesn't cover any non-approved drugs. The remi's working well for me so far.
Posted 1/31/2008 2:51 AM (GMT 0)
I actually think the difference goes beyond the mouse/no-mouse issue. I don't know the science behind it, but I think that the two drugs actually bind to the TNF-Alpha (I think that's what they bind to), in different ways, which may be why one works when the other doesn't. either way, I suggest you also post this to the crohns board, as the drugs are also used for CD and people may have useful experience on that board.
Posted 1/31/2008 3:04 AM (GMT 0)
Thanks so much for all of this. I for one, just can't seem to decide what to do. As of today, after my colonoscopy, the right side looked great, left side terrible. I personally want to exhaust all of my options before I decide on surgery, however, after 20 years plus of this, I'm leaning more towards the surgery. My quality of life in the past two years has been terrible.
One other thing I want to say is that we are moving in the next 5 months or so, due to my husband's transfer. This is going to put us close to one of the best hospitals..in Philadelphia, PA. I am waiting before I do much until I get there. I do need some relief and even though I do well on Prednisone, I realize I can't stay on that forever.
Any other feedback I would love to hear regarding Humira. As for the insurance, I have to find out. Thanks so much for that bit of information.
Posted 1/31/2008 3:17 AM (GMT 0)
Hi, I have been on Remicade since 2005, it pretty much lost it's oomph for me in 2007 and I was put on a double dose which I believe caused me to have strange side effects and eventually did have a reaction.  Now I will be trying Humira soon.  It's the same type of medicine but is injected with a shot instead of the IV.  And yes, from what I understand, Humira is all human protein and Remicade has some mouse, and I've heard for that reason Humira is better tolerated... but I can't guarantee that.  It was a big pain to get the Humira approved, I only got the approval from having Arthritis.  I was denied Humira for UC.
Posted 1/31/2008 3:25 AM (GMT 0)
Anyone had any luck with Humira?

Seems there have been posts about people starting the course, but no followups thus far...
Posted 1/31/2008 4:03 AM (GMT 0)
I just started Humira last week, and I'm still tapering off Pred, so it will be a couple months before I really know if it's working or not. No side effects at least!
Posted 1/31/2008 7:01 AM (GMT 0)
I started humira a few months ago and i have noticed some differences...it seems to be working well so far. I am tapering off entocort so we'll see how it does by itself. I'll keep you all posted.

Posted 1/31/2008 12:16 PM (GMT 0)

Severin said...
Anyone had any luck with Humira?

Seems there have been posts about people starting the course, but no followups thus far...

My guess is that when someone stops posting on this board it's because their in remission.

I started Humira one month ago. No noticeable side effects so far.

I could never get below 15mg of prednisone without flaring so my GI prescribed Humira.

My insurance covers it.

I have gone down to 10mg of prednisone for the last week and so far so good.

Still to early but I will post followups.

Posted 1/31/2008 2:08 PM (GMT 0)

I started Humira in early December.  I had my fifth dose yesterday.  No noticeable side effects so far.

I have a GI appointment on Monday and expect to start tapering prednisone (currently at 20mg).  I could never get below 20 without flaring.  Probably too soon for followups.

Posted 1/31/2008 11:09 PM (GMT 0)
Thanks for your feedback all - will post again regarding Humira again in another month or so and see how you are all going - I wanna hear "remission" people... so get to it! hehe :-)
Posted 2/1/2008 6:25 AM (GMT 0)

I REALLY hope the Humira keeps me in remission.

I was taking 150mg Imuran, Asacol three pills 3x a day and prednisone.

After the initial dose of Humira you only have to do a simple, self administered pen injection once every two weeks.

Posted 2/1/2008 12:24 PM (GMT 0)
Dear Hobo,
How long have you been on the Humira?

Yesterday I talked to my doctor and she is ready for me to try it however she thinks she might try me on a higher dose of Remicade first. We'll see. I will find out Monday for sure. She also mentioned that Humira is off-label, etc. but I knew that.
Posted 2/1/2008 12:39 PM (GMT 0)
I've been on Humira exactly one month. Took my first dose on New Years Day.
I have stopped taking Imuran, Asacol is down to 3 pills twice a day and Prednisone is down to 10mg.

So far so good.
Posted 2/1/2008 5:02 PM (GMT 0)
hey Severin - just curious, why did you try Abatacept before Remicade or Humira? where I live - in NC - I don't hear any talk of Abatacept, which is why I am asking.... thanks. sorry I can't be helpful on your question of deciding between the 2 drugs.
Posted 2/1/2008 11:45 PM (GMT 0)
UCinNC - I live in Australia and the specialist offered me the Abatacept trial. Pretty much the only way to get biologics here is to pay for them or get them via a trial... And they're too expensive to pay for!!!

Abatacept works, the open-label dose of 10mg/KG of body weight, once a month just isn't enough to combat my disease. If we could increase the rate of dosage, or the dosage itself it would have worked like a charm.
Posted 2/2/2008 7:15 AM (GMT 0)
I  have a question for anyone who has taken or is taking Remicade or Humira.  While on it did you get sick really easy, like a cold put you in the hospital, because my Dr wants to put me on Remicade but I already have two other auto-immune diseases and she's affraid my immune system won't be able to handle it.  I guess I'm just wondering if one of the medications is easier on your immune system than the other one. Thanks for everyone's input I love this site I've learned so much here. :-)
Posted 2/2/2008 9:00 AM (GMT 0)
FUNMOMMA - On the abatacept (which is closer to Humira then Remicade), I found I did get sick more often - mostly a runny nose - but never ended up in hospital. I and my GP just monitored my health more rigorously. I found that Garlic and Olive Leaf Extract both helped to keep the runny nose under control.

Can't yet speak for Remicade or Humira.
Posted 2/2/2008 10:52 AM (GMT 0)
I was on Remicade and well, I'm sure I still have it in my system however it's not working very well on the dosage I have now. I will find out the details Monday on what the doctor would like to do and see if I agree with that.
Anyway, I would say that I did have more colds but nothing major. I do have small kids too that go to pre-school and they always have a cold too so I just figure for me it's a combination of the two.
Posted 2/2/2008 12:08 PM (GMT 0)

I have been on Remicade since July and have not gotten sick except for one time, I got a cold that felt like it started to turn into a sinus infection. It held on for more than a month but never got bad enough to go to the hospital for or to even have an antibiotic.

Wash your hands RELIGIOUSLY. Try your hardest not to touch your nose and face. Convince all family memebers of the need to to wash their hands, especially when they first come in after a day spent touching the world. I get my hubby to wash up as soon as he comes in, for one thing, he takes mass transit to commute.

My job as a solo mobile dog groomer gives me minimal contact with people, but I am exposed to various pet bacteria and fungi all day. I just try to be careful as I can be.

Meesh

Posted 2/3/2008 5:05 AM (GMT 0)
I've only been on Humira for a month but so far I've not had any problems with getting sick.

I have also went from 10mg to 5mg of Prednisone today.
I've never been able to get below 15mg before starting Humira. Fingers are crossed!
Posted 2/3/2008 5:09 AM (GMT 0)
Let us know how it goes Hobo! I am keenly following the progress of yourself, Anna and Orangeman. I am working with my GI to try and get me on Humira in Australia.

If its working already within a month then thats awesome news!

Tapering from 10mg to 5mg is one of THE hardest tapers - at least it was for me. Hope this stuff works for you.
Posted 2/3/2008 6:41 AM (GMT 0)

Hi all

I have been on Remicade since October ....was bleeding everyday

was in alot of pain no meds seem to be working ....my first infusion the bleeding stop ....less pain ...bowl movement more form ....had my 4 infusion 1-27-08 ...i am not in remission but iwould say there is a 50% improvment ...i am going to have a colonosphy in about a month if there aint no inprovement since my last one ...Doc will recomend surgery ....as far as getting sick i had a flue shot ...i wear gloves all the time and i have a big bottle of hand soap in the car 

good luck to you :-)

✚ New Topic ✚ Reply