HealingWell
Search Close Search
☰

remicade not working 7 infusions

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/22/2013 3:58 AM (GMT 0)
My daughter was diagnosed with UC in January. She was 13 at the time. She had her first Remicade infusion in March after 6 weeks of Asacol and 40mg of Prwdnisone. She had relief the night of her first infusion. She was fine until after her 3rd. She began having abdominal pain and bloody poop. They moved her to every 6 weeks and doubled her Remicade. She just had her last infusion in Aug 8. Today she had bloody poop twice and belly psin. They put her on Oentasa which i picked up tonight. Does anybody know how long will it be before she gets some reliwf? She is starting high school next week and doesn't want to be embarrassed having to go to the bathroom every hour.
Posted 8/22/2013 12:06 PM (GMT 0)
If she hasn't seen relief from Remicade yet, she isn't going to. But why did your GI jump right to that? There are so many other drugs, and that is generally a drug of last resort. Prednisone can help temporarily control symptoms. Asacol is a maintenance drug to keep you in remission. It sounds like she was never in remission. There are different meds to try, along with enemas if the disease is in the rectum. You need to ask about these other options. But keep in mind there is no quick fix. Pred is the fastest thing to stop symptoms, but it's dangerous long term. This is a horrible disease, and it's definitely tough on a teenager. You might try to look for a support group for her too (I believe the CCFA has info for teens in their website). Good luck.
Posted 8/22/2013 2:11 PM (GMT 0)
Hello and welcome.

I think the reality of remicade is that it works better for some people than it does for others. I think the people who have the most success with it, usually respond quickly, and stay in remission until it stops working for them. UC is very frustrating, you can be doing great on a treatment and then it stops working out of no where. It happened to me with Asacol, one day I was in a stable remission from it, a week later, I was in a massive flare up that required prednisone. I had to start 6mp. What other medications has she tried? 6mp has worked well for me but it takes a lot time to get into remission with it (and as with all UC meds, it doesn't work for everyone). Has she had stool tests? I hope this new treatment you're trying helps. I notice cases of UC in children can be very virulent. I've seen some moms here with children with UC who ended up with everyone's worst fear (surgery) and it ended up being a lifesaver and gone on to have perfectly normal lives. Of course, there is no reason to rush into anything like that. Do a search for member "mustlovedogs".
Posted 8/22/2013 2:23 PM (GMT 0)
It's likely after 7 infusions that it isn't going to work. I had about 8 infusions with no success and my doctor took me off of it. It works for some and others it just doesn't.

I also wonder why her doc jumped right to Remicade so soon after diagnosis. There are lots of other things she could try that may work a lot better. Have you had a discussion with her GI about other options?
Posted 8/22/2013 3:42 PM (GMT 0)
They can do a test at prometheus to see if she has developed antibodies to remicade and if it is working. Unfortunately I just had this test and found that I had high antibodies and Remicade was not working for me.
Posted 8/22/2013 4:51 PM (GMT 0)
I'm so sorry your daughter is going through this. I have two younger daughters and I constantly worry that they may come down with this at some point. Every time they get a tummy ache or need to go on antibiotics I panic. You really need to read up on this disease because it is no picnic and it is a lifelong disease with periods of remission and periods of flares. I have had it for three years now and have been in a constant flare. I do better than most except for frequency and occasional urgency. I'm sure I could probably go into remission using a variety of different meds but, to be honest, I believe their side effects to be worse than the disease itself, especially considering that I don't have a spleen and would probably be even more susceptible to those side effects than the average person. Is she on any probiotics or doing any dietary changes? There are a number of non-medical options that can help and even sometimes bring on remission but this is not an area where doctors practice healing. All they know is meds, meds, meds. Meds do have their place but other things can also be a big help. The trouble is something different works in everyone. I can't imagine going to school like this with your piers.
Posted 8/22/2013 5:44 PM (GMT 0)
I think the promethius test would be a waste of money in your case. Your daughter is having continuing UC symptoms, so obviously Remi isn't going to be her miracle. Now the search for an effective treatment starts anew. I hope one of the available options will work for her. This disease can be a bear for some.

Actually, many GI's are now starting to use Remi earlier because it has statistically better results with fewer side effects than some of the other drugs. Unfortunately it just doesn't work for everyone.

My heart goes out to your daughter.
Posted 8/23/2013 5:14 AM (GMT 0)
They first put her on Asacol 3600 mg a day and Prednisone 40 mg. When that didn't work, they gave her the option of another drug that i can't remember the name of or Remicade. At this point she had already missed 3 months of school and wanted to return. She was homebound. She was diagnosed at 13, but has had flare ups since she was 10. They we all misdiagnosed until i insisted on a colonoscopy.
I work in wound care and i see quite a few people with colostomy or ileostomy bags. I don't want to see my daughter have to go through that. But God forbid that she does, i know how to take care of her. Thank you all for your input. Do thay have a suppoet group for the parents of children with UC?
Posted 8/23/2013 5:16 AM (GMT 0)
Oh, and we did the Promethius test on June 28 and it was normal. $2500 for that test. Crazy. Each infusion bills my insurance for $26,000.
Posted 8/23/2013 11:28 AM (GMT 0)

34purses said...
Do thay have a suppoet group for the parents of children with UC?

Get in touch with or google your local CCFA (Chrohn's and Colitis Foundation of America) chapter. I'm sure they could lead you to a parent's support group. Best of luck to you and you daughter.
Posted 8/23/2013 12:58 PM (GMT 0)
There is a support group for parents; it's either www.dragonpak.com or dragonpack.com

Sue
Posted 8/23/2013 9:46 PM (GMT 0)
Thank you, I will look into it
Posted 8/24/2013 2:42 AM (GMT 0)
I was going to say dragonpak too. Please stop by and let us know how she's doing.
✚ New Topic ✚ Reply