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Imuran, Remicade, or something else??

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Ulcerative Colitis
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Posted 10/22/2013 1:11 AM (GMT 0)
My DS (14 this week) has a pretty angry pancolitis flare currently. He was admitted to the hospital last night for weight loss, dehydration, bleeding D, mild abdominal pain; on 40mg IV steroids and just got the first of 3 proposed iron infusions w/ erythopoetin tonight. So the doc's want me to choose Imuran or Remicade to start pretty quickly. So far I have briefly looked at Imuran and want to run away.

For anyone up on the methylation track, some background: he had shown intolerance to amines and salicylates in food so a few months ago I was apprehensive to start some other drugs they offered. But after getting his 23andme results back, the intolerances may be due to a CBS mutation that could be assisted with molybdenum and a low sulfur diet (I have already read a bit on here about the UC sulfur link and want to learn more) so maybe I should put other meds back on the table??

He was dx in July, stable and gaining weigh in September and the 2 weeks ago went down hill after a series of unfortunate choices ("normal food", naan, and diatomaceous earth).

Any advice or suggestions of things to keep in mind? Thank you.
Posted 10/22/2013 4:22 AM (GMT 0)
I think typically the start is Imuran or 6mp and then the biologics, like Remicade or Humiara. 6mp takes a few months for therapudic levels to kick in, so I don't know if you have the luxury of time. Make sure you are at a top notch gastro center.
None of the 5asa's worked for us either, but some folks have long term success...same for foods selections... None made a difference. Don't beat yourself up over the choices. Everybody is different. Keep looking thru the menu of options here. Best,
Posted 10/22/2013 11:54 AM (GMT 0)
My GI started me on remicade before 6mp/imuran. He told me that the philosphy used to be immunomodulators prior to biologics, but in recent years that is changing where he now frequently goes with biologics first as they have far less side effects/toxcity concerns.

That said, assuming the remicade works, he wants to put me on a small dose (25mg) of 6mp to prevent the development of antibodies towards the remicade itself.
Posted 10/22/2013 12:01 PM (GMT 0)
I would suggest LDN, low dose naltrexone.

What do you think?

Posted 10/22/2013 12:57 PM (GMT 0)
I think either immunosupressants (e.g., 6mp) or biologics (e.g., Remicade) would work well for your son. While it is true that both meds carry serious side effects they are statically unlikely to occur. You need to put the benefit and risk of the treatment into perspective. I recommend you read the "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases" by the Crohn's and Colitis Foundation of America:

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

I've been on 6mp since January of this year and I've had no side effects and I survived cold and flu season unscathed. I've been on Remicade a little over a month and I've had no side effects either.
Posted 10/22/2013 3:32 PM (GMT 0)
IPOOP, that was an excellent article that you referenced in your post. It was extremely informative and made me feel a little better about the risks involved in using remicade. I'm not on it yet, but I have a good feeling that my GI will put me on it after my scope tomorrow.
Posted 10/22/2013 6:12 PM (GMT 0)
I was started on Asacol HD and Prednisone, but it didn't work nearly well or fast enough and I ended up back in the hospital for a 2 week stay. I was loaded on all the meds now: iron, steroids, mesalamines, immunosuppressives, anti-biotics, acid blockers, heavy duty pain killers, etc.

My GI recommened Remicade due to the severity of the UC and lack of reaction to Asacol HD and Prednisone. You can see in my signature now what I am currently taking, Remicade, Asacol HD, Prednisone (tapering finally), and Azathioprine (Imuran) along with extras I choose to take. My GI told me that the point of the immunosuppressive was to work with the Remicade and his current plan is to get me off of the Prednisone and then the Asacol HD eventually. Just leaving me with Remicade and Azathioprine.

I will be getting my 3rd Remicade infusion this Friday, I do not know if I am suffereing any side-effects from it or if it's from the other meds. I have joint and muscle pain that gets pretty bad at night when trying to get up/sit down/walk. No pain really when I lay down and it becomes minimal during the day. Will just have to see as I start reducing the meds.
Posted 10/22/2013 9:24 PM (GMT 0)
Thank you for the replies. DH and I are just too unsure about the Imuran and the Remicade at this point. But I will look at that link you posted from CCF. And I read a bit about LDN, I will re-investigate.

So I asked about mesalamine oral plus enema (read that both together are superior to oral alone), because we haven't tried it previously. They agreed to oral only, I think to appease me as they included a note that they don't think it will be enough to handle DSs inflammation. To which I resubmitted adding the enema, that they then shot down saying they didn't want to throw a bunch of stuff at him that won't work. I feel good that A decision has been made and we are on some kind of road.
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