GI considering taking her off Remicade

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Makena's Mom

Makena's Mom

Joined
Dec 17, 2013
Messages
30
Location
Maui, Hawaii
Hi Everybody! Hope everyone is having a great week so far!

Yesterday we had a follow up appt with Makena's pediatrician. She mentioned that she and our GI were talking about Makena's progress. He said her fistula should be healed with another 3 Remicade treatments (or so), and that she will be close to remission. Well, then he wants to take her off the Remicade and put her on an oral medication.

This freaked me out. The Remicade is working wonderfully! I feel like she's been given this miracle drug that has helped her so much, and without it we'll go back to square one. Her pediatrician said the Remicade wasn't meant to be her long term medication, but to kick start her body into remission and heal the fistula.

If this is the case, what drugs should we consider? Any luck with oral medications out there and what are your experiences? All advice welcome!!
 
Did they say what medication they want to put her on? I THINK we're having good luck with Imuran, but we were diagnosed around the same time as you so we're still pretty new to all of this too...
 
I would get a second opinion from another Gi ASAP.
Remicade is typically taken for life .
It is only stopped if it stops working or you build antibodies /have a rxn since once you stop typically you can not restart remicade again.

6-mp or Mtx can be stopped and restarted easily but they still take time to build up 3-6 months.
 
It may be different for younger kids but generally it is not advised to come off of a biologic as you body can build up antibodies and you will not be able to go back to it. Also, if her disease is fistulizing then biologic therapy has been proved the most efficacious. I'm going to tag my little penguin and mehita as both their kids are younger and are also on remicade.
 
I typed to slow, My Little penguin has already responded. I agree though I would be getting a second opinion.
 
:lol: I was going to tag mlp. :rof:

I would be leary of taking her off it. Maybe you can talk to the GI about your concerns.:hug:
 
I just called his office and left a message to have him call me. This was coming from our pediatrician, so I'd like to hear what he thinks, directly. As for the second opinion, where do I go for one? We're currently seeing the only pediatric GI in Hawaii. I wonder if I can call another on the Mainland??
 
You can most likely have a file review done by another ped GI for second, As far as west Coast maybe try Seattle Children's they have a big ped GI department.
But I agree with everyone else. Remicade is not one you can stop and start for fear of antibodies. Imuran, 6MP and Methotrexate can all be taken orally although it seems a majority of the time methotrexate is given as a shot. We did the oral form of it and you only take it once a week.
 
Now Maya142 daughters have been on and off these meds but I haven't read about to many others doing this. She'll stop by when she can.
 
Farmwife is right, M has been on Remicade three separate times. It really isn't recommended though, to stop and start Remicade because it greatly increases the risk of a reaction, (as others have said above).
We did Remicade for 3 months and she had no response so we stopped it. About 4 months later we tried Remicade again, this time with methotrexate. It worked really well until M stopped taking the methotrexate. We stopped Remicade then and M spent 4 months on Humira and now she has been put on a very high dose of Remicade (20mg/kg) to prevent further joint damage.
We've done the Remicade levels and antibody test twice and M doesn't have antibodies. So far, no reaction. I will say I'm very worried about her being on Remicade for the third time, I feel like it's a disaster waiting to happen. Her rheumatologist and GI aren't very concerned though.
 
Thank you, Maya. I'm sorry your daughter is going through so much with all these medications! I think you're all right, and I'm in the process of getting a second opinion. Still waiting to hear back from her GI. I contacted Seattle Children's Hospital and they said to send her file over and they'll get her in the system so I can speak with a Dr.
 
I think my fear would be if you come off Remicade, try Imuran/6MP/Aza only to find out it doesn't work, try Remi again and find out she's built antibodies... where does that leave you? You're back to biologics, most likely Humira.

Why not stay on Remi until it stops working, THEN try Imuran/6MP at that time?

It's not broken, so don't "fix" it, right?

Side note: my son had a fistula that he developed while taking Azathioprine. Research has shown that Remi is the most effective for fistulizing disease. Something else to consider in your case.

And really, if you demand to stay on Remi they have to oblige, don't they?
 
Dr just called and Makena's pediatrician misunderstood - he was discussing the idea of spreading her treatments further out as she gets better and better. Right now she's at 10mg every four weeks, so he might do 10mg every six weeks..and so on until shes at a lower dosage every 8 weeks. Phew! He said by no means would he completely take her off with the results he's seeing. I'm so relieved.
 
That is very good to hear and in line with how most things progress with remicade .
Lots of moving up and in then slowly out and down.
Long may it continue
 
Makena's Mom, so glad you and your GI are on same page and even happier that the Remicade is working well. Praying that will continue for a long time.

Jo
 
She was on a very high dose it seems, the standard dose is still 5mg (per Kg) / 8 weeks. So she will be more in line with a normal dosing, which is good I think.
 

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