switching from Remicade to Humira

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soccermom3
Regular Member


Date Joined Aug 2007
Total Posts : 38
   Posted 3/10/2008 11:46 AM (GMT -6)   
Has anyone had any relief switching from Remicade to Humira?
 
I have been in a bad flare for about 6 weeks - in the hospital for a week in Feb.  Remicade is just not working anymore.
 
Dr. is starting to talk about surgery.  That scares me to death.  He said he would send me to Cleveland Clinic or Johns Hopkins.  I'm from the South - so both of those are a LONG way from my house!!!
 

Diagnosed Pancolitis 5/05.
 
Remicade - every 8 weeks
Imuran - 100 mg per day
Asacol - 9 pills per day
Prilosec
Zantac


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3088
   Posted 3/10/2008 12:40 PM (GMT -6)   
oh boy, I'm in your shoes right now- Remicade is doing very little anymore, even at a high dose. My GI said we could try Humira, but he's not optimistic. He's been talking surgery for the past year now! I did some research myself, & discovered that of the Humira users who went onto it due to lack or response to Remicade, approximately 20% got some measure of relief. Most got nothing. I've found that it's promising when it's used initially, but if you stop responding to Remicade, chances are Humira may buy you a couple more months, that's about it. Stinks. Plus it does have all the nasty side effects that Remicade has. So, I haven't talked with my Gi since my colonoscopy this past Friday (which was horrific), but when I do, I am going to tell him I don't want to try Humira. Right now I'm waiting for my surgeon to call me back. I'm done, stick a fork in me, turn me over, etc., etc., etc.... Currently, surgery doesn't scare me- it gives me peace of mind. My husband said to me "Just do it so we can get back to being a family!". He wishes I had done it months ago when I originally had it scheduled. But it made me think, it's so true- my kid & husband have been waiting in the wings for me- Mom doesn't do this or that cause of the bathroom issue, Mom doesn't go on long car trips (heck, even short trips!), Mom is ALWAYS in the bathroom. It's not fair, to them or myself.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


soccermom3
Regular Member


Date Joined Aug 2007
Total Posts : 38
   Posted 3/10/2008 12:53 PM (GMT -6)   

I guess we all have that limit that we reach when we just give up hope on any medication and go for the surgery.  I know that this is crazy, but I honestly wish that the surgery would be an emergency - that way I wouldn't actually have to make the decision.  I know that is NOT the way to go - but I am SOOOO scared of this surgery. 

20% chance of Humira working doesn't sound very good.  I was REALLY hoping that my Remi infusion last week would turn things around, but that hasn't happened yet.  I do realize that something HAS to change.  I can't continue to function like this - I have 3 small children to keep up with.

I have another GI appt in about 3 weeks.  I am anxious to hear what he has to say about switching.  While I was in the hospital, his nurse practictioner said that they do not like to switch the medicines.  I never did ask the Dr., but I will on my next visit.


Diagnosed Pancolitis 5/05.
 
Remicade - every 8 weeks
Imuran - 100 mg per day
Asacol - 9 pills per day
Prilosec
Zantac


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5396
   Posted 3/10/2008 1:08 PM (GMT -6)   
Heck you both might be pleasantly surprised by surgery. I was! I have never regretted the decision but I didn't want to have to make it either. Fortunately it all worked out and life has never been better.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3088
   Posted 3/10/2008 2:39 PM (GMT -6)   
I'm counting on being pleasantly surprised, Due! And I totally understand what you mean, soccermom, when you say you wish it could be emergency. Who "wants" to make that kind of decision? I wish someone else would make it for me, but unfortunately..... I suppose I could say my doctors have made it, every one I've ever seen has recommended surgery. Why don't I listen? I'll be curious to hear what your GI says about switching too- maybe you should call him? Just to give oyurself a heads-up. ya know? I will be going for my pre-ops & another meeting with the surgeon mid-April, with surgery tentatively scheduled for May 7th. I am glad.... I just want this over! For me, that 20% rate on Humira just isn't enough to justify going thru the emotional & physical roller-coaster again. And there will always be "something" out there...it'll be a relief to not have to think "What about trying this med...." again. Check out the ostomy forum- the people on there are great & they are enjoying life.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 3/10/2008 4:11 PM (GMT -6)   
I've been doing great on Remicade since last summer but the bloody stools have reared their ugly heads again. Going to my GI later this week. I'm guessing he'll up my dosage. If that doesn't work I'll try Humira - already been approved for it. It seems like it does wonders for Crohn's but I haven't heard a lot of positive responses from the UC people who are using it. It's amazing how quickly you can go through all the med options. Some of us have checked them off pretty darn fast.

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/10/2008 4:30 PM (GMT -6)   
It's like you all read my mind. I have had the exact same things on my mind today after meeting with my GI today. I have decided that I am going to try Humira in 3 months once I save up enough shots to start it at the right doseage (long story, basically my insurance won't let me get more than 2 shots every 30 days and I have to have 4 right now and 2 in 15 days after). We talked a lot about surgery but I said that currently, I could live the way I am at this point. I have about 2 bad days a week and blood loss daily. I risk emergency surgery if my ulcer breaks into my vagina, but otherwise, I have decided to keep waiting for surgery. Plus I am going in for a test for Crohn's just to make sure I don't have Crohn's before getting surgery.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, 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: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/10/2008 6:05 PM (GMT -6)   
have you tried VSL#3 probiotic? It really helped with the D and kept me in remission almost a yr...for me surgery is last option. I will be starting Humira this week and am keeping my fingers crossed
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3088
   Posted 3/10/2008 6:07 PM (GMT -6)   
princesscolon, was your GI enthusiastic about you trying the Humira?
I mean, does he seem to think you'll get good results, for a long period of time? Mine was willing to give it a try, but he wasn't particularly thrilled with that idea. I think he was just humoring me, to be honest. He's a great doctor, but I know he feels we've given pretty much everything a try. He said to me right before we did the colonoscopy "I mean, you fought a good fight! I'm not talking about a little skirmish, I do mean a battle!" What'll you do after Humira? I hope things go well with your ulcer- I've been dealing with an RV fistula on & off for a few months now too- nothing will fully close it. Aside from surgery.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/10/2008 7:59 PM (GMT -6)   
Hi Eva,
My GI seems hopeful about Humira. He said I should give it about 6 months on it and see how I'm doing from there. My GI isn't as ready to rip my colon out as he used to be cause it looks "so good" although he says it is the source of all my problems. He said if I do get a rectovaginal fistula that I HAVE to get the colectomy and illeostomy and rectum removed.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, 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: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3088
   Posted 3/11/2008 11:20 AM (GMT -6)   
I spoke with mine today & told him that I had decided against Humira. He said "Well, it'd be just sticking your finger into the hole in the dike." Which is what I figured also. And he couldn't be happier about me deciding to have surgery. I just can't do the med runaround anymore. After looking at my scope results, the doctor mentioned something that made me feel even better about my decision- I guess my entire colon is filled with pseudopolyps, which is no big deal itself. However, it makes cancer detection virtually impossible- you can't remove all the pseudopolyps there are so many, so... I wish you luck with Humira! So you don't have active disease currently?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


bierhere
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/26/2008 7:44 PM (GMT -6)   
I was searching since tonight will be my first Humira injection. I've been doing Remicade for 6 years with generally good results. I started at at 8 weeks and ended my treatments getting Remicade every 4 weeks. Over the last year, the response has been slowly going down and down and finally pain and no ability to eat for the last 5 weeks.

I saw my GI. He instantly switched me to Humira, which we talked about about a year ago during a short hospital stay. He told me I'm the third patient he is moving to to Humira and that his other two patients all had great results.

I've post an updated in a couple of days.

whitney8587
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/27/2012 11:12 AM (GMT -6)   
Hi All,
I am new to posting but would like to share what I have learned from experience with my Crohn's I've had for 12 years.
 
I was ready for my Dr to remove my colon and get the bag so I could get on with my life and I went to Mayo Clinic in Jacksonville FL (I live in Naples) the 8 hr. trip was WELL worth it!!
Mayo Clinic (dr. Michael Picco) the head of the GI Dept. there said that if I had Crohn's the bag would not help; the disease moves around and removing my colon would stop the disease from being in my colon but then it would move on to other organs or parts of my body! And he was right!
I have tried every drug out there and sooner or later my bleeding would come back in the stool and my left side would leave me in bed on a heating pad or in the living room where I had made the area around the couch my new bedroom! Waste basket and all! NOT GOOD!
My Dr. in Ft. Myers was a QUACK and I finally found on my own-a great Dr. in Naples and I am doing much better on the blood and pain area now on Remicade for 2 years but the unexpected diaherra came back with horrible gas and I too had built up anti bodies to the drug. My last drug is Humira and not that the thrill of self injecting doesn't bother me but the posts from this drug's users has made me a little scared but I am going to start Humira as soon as my Rx arrives at the Dr.'s office! If anyone ever wants to chat or ask me anything about  any drugs I've been on or drs or anything, just email me. This has been a real helpful tool and I appreciate everyone taking time to do it! Hang in there so many people are helped by sharing information and there are a lot of good drugs out there everyone's DNA is just different and it's mostly trial and error with the disease  but Mayo Clinic is great and if I wouldn't have talked to them I would have had the bag 12 years ago so GET A SECOND OPPINION and don't give up! Mayo also told me that once you start cutting out sections of the colon, the bleeding comes back to those areas with more pain and blockage! So don't have the surgery quickly without a second opinion from a great source! You only live once and YOU ARE WORTH it! My fatigue from arthritis now is horriffic but I'm on prednisone now for that and have to take a pill (Ambien) to go to sleep and then the prednisone when I wake up and Prilosec and Remicade and I still have my Handicap sticker to make the "Mad Dash" to every bathroom in town and some days with the flu like withdrawls from going off Remicade make it almost impossible but I pray hard-and often and have my children, friends and family and I just keep telling myself I can do it and that there are so many others that have it worse than me and there are!
Hope this helps!
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