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Wondering about LDN and Remicade

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Ulcerative Colitis
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Britnee slayton
New Member
Joined : Jan 2018
Posts : 8
Posted 10/6/2019 12:39 PM (GMT -7)
So has anyone ever tried something called LDN? *Low Dose Naltrexone or how ever it is spelled.

I have my remicade infusion tomorrow I got upped to the maximum dose so lets pray i dont hurt like hell in the morning or after my infusion.

[added subject]

Post Edited By Moderator (notsosicklygirl) : 10/6/2019 3:10:18 PM (GMT-6)

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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 10/6/2019 2:12 PM (GMT -7)
A few members have used LDn, some with luck. I didn't try it personally, but I always wanted to. I had surgery though and I live quite well now, without drugs or worries about flare-ups, so I can't say I think about it much these days. It's not the easiest to get it prescribed since it doesn't have a ton of studies backing it's success in treating UC specifically. That said, there's not a lot incentive to get it approved considering it's a cheap generic.

So far as remicade, if you have body aches after dosing, there's a chance you have built up antibodies. You should get checked before your next dose. If the results show antibodies or that it's ineffective, I would look to a different treatment, something other than a TNF-blocker. So not humira or Simponi, something like Xeljanz or Entyvio would be better options. I always had debilitating pain after the infusions. it would pop up in the night and I would hardly be able to walk without excruciating joint pain. I also never had much in the way of results...

Also, get stool tests to rule out pathogens or c diff.
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Britnee slayton
New Member
Joined : Jan 2018
Posts : 8
Posted 10/6/2019 2:44 PM (GMT -7)
I thought about other options they wanna schedule a bone scan but im allergic to the barium they make you drink (I learned that the hard way. But as of today the pain actually wasnt too bad. And i just got my labs back from a week on Imuran, i had absolutely no pain while being on it so im hoping To see a change,sad
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 10/7/2019 5:25 AM (GMT -7)
I had a bone scan, a DEXA and did not have to drink anything beforehand.
LDN is an alternative treatment that is not approved for the treatment of UC. Ancedoteally, some say it has helped them, while others tried it and had no improvements.
I'd recommend only trying one new thing at a time.
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quincy
Elite Member
Joined : May 2003
Posts : 32548
Posted 10/7/2019 10:49 AM (GMT -7)
I've had 2 bone scans and no contrast. Barium is only used for gastro scans.
q
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