Humira or Remicade? How did you go?

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Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/30/2008 5:00 PM (GMT -7)   
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?
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 1/30/2008 6:17 PM (GMT -7)   
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
UC diagnosed in 1985...22 years.


Was on Remicade...no longer working for me as of January 30, 2008



6mp

Rowasa

Cortenemas


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 1/30/2008 7:08 PM (GMT -7)   
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
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, starting ye another taper, 1/30, 30 mg. 12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/30/2008 7:11 PM (GMT -7)   
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.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/30/2008 7:51 PM (GMT -7)   
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.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 1/30/2008 8:04 PM (GMT -7)   
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.
UC diagnosed in 1985...22 years.


Was on Remicade...no longer working for me as of January 30, 2008



6mp

Rowasa

Cortenemas


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/30/2008 8:17 PM (GMT -7)   
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.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/30/2008 8:25 PM (GMT -7)   
Anyone had any luck with Humira?

Seems there have been posts about people starting the course, but no followups thus far...
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 1/30/2008 9:03 PM (GMT -7)   
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!

glaciergrl
Regular Member


Date Joined Apr 2005
Total Posts : 269
   Posted 1/31/2008 12:01 AM (GMT -7)   
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.

23yrs old/ college student/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006



Currently on Entocort EC (varying doses)

Levbid .375

Ursodiol 300mg BID

multi-vitamin


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 1/31/2008 5:16 AM (GMT -7)   
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.

orangeman
Regular Member


Date Joined Oct 2007
Total Posts : 36
   Posted 1/31/2008 7:08 AM (GMT -7)   

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.

 


UC since April 2006; first flare May 2007, hospitalized 28 days.
Remicade infusion brought symptoms under control, but caught MRSA infection from PICC line.
2nd Remicade at 14 weeks, severe reaction, no more Remicade.
currently tapering prednisone (20mg/day down from 60), will taper 2.5mg after fifth Humira injection, crossing fingers that Humira will help me get off the prednisone


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/31/2008 4:09 PM (GMT -7)   
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 :-)
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 1/31/2008 11:25 PM (GMT -7)   

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.


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 2/1/2008 5:24 AM (GMT -7)   
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.
UC diagnosed in 1985...22 years.


Was on Remicade...no longer working for me as of January 30, 2008



6mp

Rowasa

Cortenemas


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 2/1/2008 5:39 AM (GMT -7)   
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.

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 2/1/2008 10:02 AM (GMT -7)   
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.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/1/2008 4:45 PM (GMT -7)   
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.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


FUNMOMMA
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 2/2/2008 12:15 AM (GMT -7)   
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. :-)
 
Diagnosed UC 11/9/07, ApL 5/11/98, Lupus 2000
Asacol 400mg 4 pills 3xday, Prednisone 20mg 2xday, Elavil, multi-vitamin, calcium & vit D, pro-biotic, colocort enema twice daily, cymbalta, prevacid, Levaquin, Flagyl, Aloe Elite Bentyl.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/2/2008 2:00 AM (GMT -7)   
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.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


SGRUBB
Regular Member


Date Joined Jun 2007
Total Posts : 67
   Posted 2/2/2008 3:52 AM (GMT -7)   
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.
UC diagnosed in 1985...22 years.


Was on Remicade...no longer working for me as of January 30, 2008



6mp

Rowasa

Cortenemas

Post Edited (SGRUBB) : 2/2/2008 3:55:04 AM (GMT-7)


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 2/2/2008 5:08 AM (GMT -7)   
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

Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, starting yet another taper attempt, 1/30, 30 mg.
12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 2/2/2008 10:05 PM (GMT -7)   
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!

Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 2/2/2008 10:09 PM (GMT -7)   
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.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 28yo male, Australia. Diagnosed at 16yo;
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 1xDesert spoon of Metamucil smooth orange 3 times a day;
    - 3xGarlic Oil caps 3 times a day, 7mL Olive Leaf Extract 2 times a day.


RMA
Regular Member


Date Joined Aug 2004
Total Posts : 79
   Posted 2/2/2008 11:41 PM (GMT -7)   

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 :-)


REMIDCADE 10-02-07
Asacol 4x3 a day
________________
mercaptopurine 50mg 1 1/2 a day
allopurinol 100 mg
rowasa enema pm generic
multi vitamin
folic acid
fish oil
 
dx 2004 uc
 
 

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