Jumping to Remicade too quickly?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Feb 2009
Total Posts : 2
   Posted 2/28/2009 11:55 AM (GMT -6)   
Greeting everyone; I'm new to the forum. I've been reading posts over the past month or so and thank you all for such interesting reading and all the different advice. I was diagnosed with left-sided colitis back in September 2008 - doctor labeled it moderate/severe. Since then I've run a course of Asacol and Colazal with no positive effect. In November I started Prednisone, ramping quickly to 60mg/day (currently at 40mg/day) - still, no real positive effect. Most days I go to the restroom 20 times or more with the standard stuff, bleeding, cramping, mucus, and such. A couple of weeks ago I read about the spinach & sunflower seeds and have incorporated them into my diet. Some days I think I'm getting better but most days are still the same. My personal physician suggested I remove all dairy, meat, and gluten from my diet as well. Trying that too.

Now my question: I see that many of you have taken meds that I've never been introduced to or heard of; after no response to Asacol, Colazal, and Prednisone my Gastro has recommended Remicade. Is it too soon for me to jump to the biological drugs without trying some of the others? Anyone care to chime in?


Veteran Member

Date Joined Feb 2005
Total Posts : 6448
   Posted 2/28/2009 11:56 AM (GMT -6)   
Hi UCGreenhorn, and welcome to Healingwell. I've been on Remi for almost four years now; I was horribly sick when I started, and I jumped into Remicade pretty quickly too after failing all other meds. I'm happy I did, and have had fantastic results. When I started, Remi wasn't even approved by the FDA for UC use. It was only approved for Crohns and RArthritis. All I can say is that it's been wonderful for me and for many others. Some don't do well with the drug, but have moved to other options.

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
Co-Moderator for the UC Forum

Regular Member

Date Joined Feb 2009
Total Posts : 31
   Posted 2/28/2009 12:06 PM (GMT -6)   
I've had UC for 10 years, that was completely controlled, I only took Pentesa suppositories the whole time, then this past Nov/Dec had an awful flare and spent over 2 weeks in the hospital, we tried everything including the predisone injections, NOTHING would work...I really worried when they suggested Remicade so quickly too, but I don't think there is many other options out there but surgery. I'd tried all the diet advice as well.

But after 1 infusion started to feel better, and after 2 my colitis is much better, I've had some other problems, that I thought were related to the Remicade, but just found out they aren't -- so I'm keeping on with the Remicade.
Male 38, diagnoised in 1998, first major flare in November 2008, have had 2 remicade infusions
have used pentesa, salofalk pills (mesalamine), and enema's.
Started salofalk again until I can get my next remicade.
currently decreasing predisone, take folic acid, calcium, vitamin D, HMP powder and a multi vitamin

Veteran Member

Date Joined May 2006
Total Posts : 619
   Posted 2/28/2009 12:57 PM (GMT -6)   
If I could've avoided a two year flare along with two years on Prednisone due to steroid-dependence by starting on Remicade more quickly I certainly would have!! If you've tried other medications and are not being helped by them it's either Remi or surgery for you my friend! The Remicade has been a real godsend for me and for many people on the board here. It does seem to be well-tolerated and you are in the right place when you are getting it should you suffer any adverse reactions.

Some people complain of tiredness after their infusions but I have never experienced that at all. Just be sure to bring a book or an MP3 player of something quiet to busy yourself with in the chair because you'll be sitting there for about three hours, perhaps longer the first time. I am done with my infusions now in about 2 1/2- 3 hours. They start it slow and take your temp and BP every 30 minutes and speed the infusion up after each check.

You should notice some improvement within a few days, although complete remission can take several infusions. I had significant improvement right away but it was almost a year before I felt I was in complete remission, and my mornings are still a bit rough nearing the six week mark between infusions.

The side-effect sheet scared the bejeezus out of me, but you have to understand that if even ONE person in the clinical experiences something it gets into the warnings. Most people do seem to tolerate it well. What I don't care for is the thought of being on it indefinitely. I will likely have the jpuch surgery at some point, but now is not a good time to be out of commission for a couple of months, so thank goodness for Remicade!!

46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

13 Remicade infusions: 1st: 7/21/07; most recent: 1/21/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

Veteran Member

Date Joined Mar 2008
Total Posts : 1202
   Posted 2/28/2009 1:50 PM (GMT -6)   
Daughter was diagnosed just one year ago, and we are on our 5th infusion of Remicade. It is finally working. She is almost normal. We were on your same path, and it was a darn quick road to the big biologic drugs. Nothing really worked for her till this...
We are not thrilled by the long list of dangers, but felt there was not a choice here. Some decisions get made for you. No sunbutter was fixing a colon too fragile to function. Goodluck!
Daughter,15 diagnosed 1-08 w/ UC .
Asacol, Prevacid, Flagyl, Prednisone 50mg, major flare, now off!, Hosp. four x this yr. Low residue diet still, an
6MP, Colazal ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Cortifoam enemas 4xweek
Trying probiotics, Niferex, fish oil, and Mangosteen for kicks.
Had 4th infusion of Remicade(12-08), and still on all of the other drugs, except Flagyl and Pred. Better, no remission. In a drug trial for children. Living on a flare's edge.

Veteran Member

Date Joined May 2006
Total Posts : 619
   Posted 2/28/2009 3:54 PM (GMT -6)   
Katmom, what Probiotics is she using? Culturelle is an excellent one.
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

13 Remicade infusions: 1st: 7/21/07; most recent: 1/21/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 2/28/2009 6:13 PM (GMT -6)   
Have you tried any of the rectal meds? I think the Rowasa enemas really made the difference in getting me out of this first flare. I don't want to say I'm in remission yet as I haven't started to taper any of my meds, but I'm down to two relatively non-urgent, fairly formed BMs a day after having over 15 a day.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 2/28/2009 7:14 PM (GMT -6)   
     Just make sure they test you for TB...I suppose they will, before starting Remicade.  I was exposed to the TB virus years ago and Remicade can activate the virus in my system with possible fatal results.  Remicade is NOT an option for me.  I am on 6MP.  Not too happy about that either but at least I am in remission for the present time.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

Mamas Boys
Veteran Member

Date Joined Oct 2005
Total Posts : 1460
   Posted 3/1/2009 2:32 PM (GMT -6)   

I started Remicade before the other stuff because I was in such a bad flare that we wanted to get me out of it quickly.  It worked great - and it is about 4 years later now and I am (knock wood) still doing great.  I say go for it if nothing else seems to work.

Have you tried incorporating rectal meds into your routine?

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!

New Member

Date Joined Feb 2009
Total Posts : 2
   Posted 3/1/2009 10:19 PM (GMT -6)   
Thanks for the input folks. No, I haven't tried any of the rectal meds but I will ask about them now. Perhaps the double punch will do the trick for me!

Thanks again.

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 3/2/2009 2:27 PM (GMT -6)   
To be honest, I wish I had tried Remicade a lot sooner than I had...I was on 40mg Prednisone and 2400mg Asacol twice a day (though I had severe pancolitis), and nothing was working. I didn't react to the Remicade either, but I wish it was tried sooner so we knew that it was a joke like the rest of the meds sooner, as I suffered a great deal for a long time before my surgery.

I feel that Remicade is very beneficial for many people, and I would hate for you to mess around with other medications that may or may not be beneficial. Your doctor knows you and knows the medications available. My GI didn't even attempt certain medications b/c I was not reacting to ones that normally would have made a difference. I also had very poor side effects (immune system wise) with the combination of meds and I just could not handle them anymore.

I personally do not feel that jumping into the Remicade is bad choice b/c UC flares are no laughing matter and I feel that experimenting when you are in pain, suffering and going to the bathroom with urgency over 15 times a day is no way to live. I completely understand how you feel, and as I said, I wish we just went straight to the Remicade b/c I suffered way to long. The worst I got sent me to the bathroom around 40-50 times a day (from midnight to midnight). I did not sleep much b/c of my constant bathroom breaks and no matter what I ate caused pain and extra bleeding. My colon was angry all the time and there was nothing I could do to make it happy. : ) So I just got rid of it, along with my rectum b/c the hemorroids were ridiculous and I was just sealed up b/c I never want to go poo again! That's just my opinion. : ) I was traumatized and spent enough time in the bathroom as it was. My best friend is funny, she told me that I probably spent enough time in the bathroom during my flares that most people do in their entire lifetime. So I already put in my time and dues to the bathroom gods. : ) We all have a wonderful sense of humor about my disease and my surgery. : ) I call my pouch my 'accessory' and am in the process of designing designer pouch covers b/c most of us have permanent ileos, so why not make them pretty?! : ) Even for those who have the j-pouch in their future, why not enjoy or at least make the best of the ostomy while they have it?! I'm super excited about this and am shopping around for a good sewing machine so I can get going on different concempts to see what's the best. But that's all beside the point...you really should think about what is going to get you into the remission the quickest without much wait or experimentation...that's my opinion. Suffering is serious business and I hope you can take control of your UC as soon as possible.

: ) Good luck to you!!! : )
: )  Robin
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
"Your mind is like a parachute, it only works when it is open."  -Unknown

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 10:02 PM (GMT -6)
There are a total of 3,004,492 posts in 329,146 threads.
View Active Threads

Who's Online
This forum has 161740 registered members. Please welcome our newest member, Liz in Colorado.
240 Guest(s), 5 Registered Member(s) are currently online.  Details
DBwithUC, swimmer2, MG0351, oregonhay, CAdogsRus