Failing Remicade, experience needed

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Katmom
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Date Joined Mar 2008
Total Posts : 1202
   Posted 11/20/2008 1:22 PM (GMT -6)   
3rd infusion was Monday. No relief this time. Before the 3rd infusion she was avg. 7-9 BM's with some blood. Better cramping than before the Remicade.
Had a good week or two after the first infusion, and now we are slipping. Yesterday was 8 BM's, with blood, urgency, cramping, the whole deal. We will probably get pulled out of the study that they are doing( to try to prove that this will work for children). Feeling so very sad, and there are not many options left. Has anyone had luck with Humeria, when Remi didn't do the trick? She has not had an allergic reaction to it, just ineffectiveness.
Are we missing something? Check out the drug list on my signature lines, and you'll see we have tried most all categories pf drugs mentioned here. Magic bullet anyone???
Daughter,15 diagnosed 1-08 w/ UC Learning from you all.
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. @ U of C, Comers, four x this yr. Low residue diet still, and still having problems.
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Remicade next up.
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
On 2nd infusion of Remicade, and still on all of the other drugs., except Flagyl and Pred. Better, not healed.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/20/2008 2:26 PM (GMT -6)   
Has she tried Rowasa enemas along with the Remi to help get her into remission? I know many that have had to use the Rowasa's to get them over the hump. I went into remission quickly with Remi, but still had some bad days. It took about six months before I was totally feeling better and just about a week before my infusion, I would have a little urgency but no blood or mucous. The problem with these meds is that they work for some but not others. Has her doc mentioned anything to help out? Has he talked about Humira? If these don't work and surgery is an option, read about Bratcat who had the surgery. She is doing well.

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/20/2008 2:36 PM (GMT -6)   
Well as much as you probably don't want to think about it, surgery is probably the next best step for your daughter. I encourage you to visit www.j-pouch.org to talk with others whose children had the surgery or had the surgery themselves when they were young. It's given me my life back and allows me to eat whatever I want and live medication free. It's not any easy surgery but after the recovery the results are far superior than living with chronic illness.

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


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/20/2008 3:31 PM (GMT -6)   
Katmon- have you discussed with the doc yet possibly trying Refaxamin, a non-systemic antibiotic? Before I resort to surgery (if Remicade doesn't get me into a pred-free remission), along with Humira, I consider it something else to try, since it seems to work well for some.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 mg pred, 100 mg Imuran
TCM, Probiotics (Primal Defense and others), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 11/20/2008 3:42 PM (GMT -6)   
I'm curious, is it a controlled study with a placebo group? Are you positive your daughter is even getting Remicade and not a placebo?

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 11/20/2008 4:23 PM (GMT -6)   
Thanks for the posts.
RE; the Rowasa, she started on those when she was first diagnosed, and it increased her frequency. Poorly tolerated. Now she is using the Cortifoam nightly, she she is treating from both ends( as Quincy likes).
RE the study: it is not blind. She is getting the med., and the only thing they will be looking at is the frequency. There will be 8 and 12 week intrevals. At the present, she can't make it one week on the same dose, so...
The doc never mentioned Refaxamin, so I will ask. I cannot bear the surgery option right now. Need some time to digest. Humera is possible, though the doc was not too hopeful considering it acts in the say way as Remicade. One possibility is to drop out of the study, and get a double dose of Remicade. We will probably try that unless someone warns us otherwise. Unfortunatly, Remicade is not approved for children (hence the study), and the insurance may not pay. They denied us right off of the bat, but we will appeal...at 10k per infusion, it is a mighty big bill!
K
Daughter,15 diagnosed 1-08 w/ UC Learning from you all.
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. @ U of C, Comers, four x this yr. Low residue diet still, and still having problems.
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Remicade next up.
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
On 2nd infusion of Remicade, and still on all of the other drugs., except Flagyl and Pred. Better, not healed.


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 11/20/2008 9:49 PM (GMT -6)   
I had a horrible reaction to the Remicade, and switched to Humira. It might be worth a shot. Don't shut the door on that one.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/20/2008 11:03 PM (GMT -6)   
Sometimes it takes up to five infusions for Remicade to work properly.
I wasn't having much improvement after my 3rd Remicade infusion either, but my c-scope showed that only a few centimeters of inflammation was left, so I canceled surgery. And so I tried different combos of rectal meds. My 4th infusion and alternating between Canasa and Anucort (steroid suppository) helped me dramatically.
 
Rifaximin only helps about half of the UC patients. It made things much worse for me, but it could be worth a try.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/20/2008 11:24 PM (GMT -6)   
I tried Remicade, started it in august 2006 was tons better by two weeks after first infusion, did prettygood until November then started having problems about two weeks before the next infusion, by Feburary it had stopped working completly and i was worse than i was before.  I ended up with surgery in april 2007, smartest thing ever.
I was also on asacol and 6-mp with the remicade.  I think it's just a big combo of hte right meds, and mostly luck to get it to work for everyone.
I hope she gets some help and starts to feel better.

serothschild
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 11/22/2008 10:17 PM (GMT -6)   
I had a similar response to your daughter on remicade at 5 mg (4 infusions) and thought, along with my doctor that it was not really working...I did not want surgery and refused to give up hope on the remicade.  I asked if he would double my dose and immediatly after that 10 mg dose, I have been symptom free...that's been for four months now.  It's terrrible that insurance won't cover the cost of this med.  Definately try the Humira if you can get it covered or if there are no other meds to try.
 
Good luck to your daughter in dealing with this disease.  Surgery and the ideas of it are now are not as scary now that I know I've tried almost everything and if Remicade stops working, I think I'd be okay withthe surgery after hearing how drastically it has improved the quality of life of those who post on this site.
 
 
Sandra

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