Remicade Didn't Work

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

markham mom
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/6/2009 6:37 PM (GMT -6)   
My son, 13, was diagnosed with U/C last June and was prescribed Pentasa.  His symptoms got worse and he felt awful.  We stopped the Pentasa because he felt terrible.  He was then given Prednisone (40 mg) for 3 weeks, tapering 1 a week after that.  When we had tapered him down to 25 mg he was prescribed Asacol as a maintenance drug.  The next day the symptoms started up again.  We didn't know if he was reacting because we were tapering off of the prednisone or if he was reacting to the Asacol.  We stopped the Asacol and the flare-up ended.  We were told he was "sensitive" to Pentasa and Asacol.  We chose the option of "no drugs and see what happens"  after the prednisone was finished.  He was great for 2 months and then a flare-up started.  Prednisone was prescribed (40) and when we began tapering, he began flaring again.  His doctor suggested Remicade.  He had his first two infusions (felt great) and then began flaring 2 weeks after the 2nd infusion.  He had the 3rd infusion and continued experiencing symptoms.  His doctor told us he will not be given the 4th infusion because she does not think it is working for him.  He has began Prednisone again and after 2 weeks at 40 mg he is still flaring.   We are seeing his doctor tomorrow.  She has mentioned trying imuran.  Does anyone know of any other options for him? 

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/6/2009 7:07 PM (GMT -6)   
Colazal, azulfadine, apriso, hydrocortisone enemas, cortifoam, the steroid supposits, immuran 6-mp, vitamin E enemas (lialda maybe, releases a little different than the asacol)...... There's actually alot of things. Need to post a little more info in a signature so people can be a little more specific depending on disease extent and area.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD3+Ca/SuperDHA


markham mom
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/6/2009 7:30 PM (GMT -6)   
Thank you so much for the info. This is all new to me. You suggested I post more info in a signature...what does this mean?

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/6/2009 7:34 PM (GMT -6)   
Just above (left side) where it says, "new topic/post reply" you will see... "Log Off Control Panel". Click "Control panel", then "edit profile", scroll down to edit signature and type some info there. It gets posted with every post you make.

My sig below is in green. Just lets people know a little more info.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD3+Ca/SuperDHA


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 4/6/2009 7:38 PM (GMT -6)   
Hi Markham Mom. I'm mom to two kids with UC and wanted to welcome you to healingwell! Neither of my two have done remicade, but seems like it is a little soon to quit - I have heard of it taking a bit longer to totally kick in. Humira is usually the next step after remicade fails.

Imuran is what my son takes (my daughter take 6mp which is a sister drug to Imuran). When he flares badly he takes Prednisone, Sulfasalazine (same class of drugs as Asacol - 5asa), rectal meds (either canasa -a 5asa or cortafoam - a steroid) and this last flare we also started Imuran. It takes like 3 months to do it's stuff.

Have you tried any probiotics? Any rectal meds?

I am so sorry you all are going through this. Have you considered a second opinion? I also post over at http://www.dragonpack.com/ibdsupport/parents/ which is a great resource for support and info. There are quite a few kids there on Remicade and some mothers that are really up on all the meds.
Julie

Mom of Son 17 UC dx 07/02, Sulfasalazine 6g, Azasan 75mg, Cortafoam (when flaring), folic acid, L. Reuteri, Culturelle, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Colazal 750mg x 3, 6MP 12.5mg, Iron, Vit/Min., Culturelle


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/6/2009 8:06 PM (GMT -6)   
My GI said the same thing--that if Remicade hasn't worked in 3 infusions, then it probably won't at all. However, I was able to achieve remission with 5 infusions and the right combo of rectal meds. Don't lose hope yet!

He could take Remicade and Imuran at the same time and see if that helps, but I personally wouldn't want to be on two immunosuppressing medications at the same time. Or maybe he could take a few infusions of Remicade and then wean off to the Imuran only. Otherwise, the only things (in the traditional medcial realm) left are Humira, which is still in clinical trials, or surgery.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


markham mom
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 4/6/2009 8:58 PM (GMT -6)   
A big thank you to everyone that responded. This makes me feel better, knowing that my son has other options available to him. I will be seeing his doctor tomorrow and I will ask her about the other meds.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/6/2009 9:09 PM (GMT -6)   
A good place to start reading about the different medication and treatment options is the Crohn's and Colitis Foundation of America website. The address www.ccfa.org
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, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 5:04 AM (GMT -6)
There are a total of 3,005,379 posts in 329,237 threads.
View Active Threads


Who's Online
This forum has 161774 registered members. Please welcome our newest member, Audreyli.
224 Guest(s), 3 Registered Member(s) are currently online.  Details
Mike0228, leelee112233, ceebs13