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Stopping Imuran abruptly

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Ulcerative Colitis
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Posted 6/19/2016 1:13 PM (GMT 0)
Hi All,

I have been taking Imuran now for 2 years. I was put in remission by FMT for 1 year and now by LDN. I dont think Imuran ever helped even though I never stopped it.

Is there any issue with stopping Imuran abruptly? Does it need to reduced gradually like steroid?
Posted 6/19/2016 2:08 PM (GMT 0)
I stopped 6mp without consulting my GI and no harm was done. I took it for a year, maybe less, and saw no beneficial results but had bruising and other negative symptoms from it. Take my actions for what they are worth, one person's experience.

That's good news that FMT and LDN helped you and I'm sure you'll watch closely to see if there are any negative changes when you stop Imran. Best of luck.
Posted 6/19/2016 2:21 PM (GMT 0)
I would talk with your gastroenterologist about your change in maintenance medications. Generally speaking, there's nothing wrong with quitting immunomodulators cold-turkey. It does take multiple months before their effects are out of your body. I'd encourage you to be on a uc maintenance medication of some sort.
Posted 6/19/2016 2:21 PM (GMT 0)
I believe I just stopped too. It will stay in your body for a while regardless. Id be worried that maybe it's doing something, but if you're sure it never has, you should do what you think it best for you.
Posted 6/19/2016 2:29 PM (GMT 0)
I'm going to keep my pentasa AS IS even though I know it is not helping. My GI does not know about my stopping of Imuran as she does not support LDN. I'm doing LDN through my primary who was kind enough to give prescription even though he does not know about LDN.

Now the second main issue, is how will I manage my GI as she is under the impression that I'm taking Imuran. I will get caught when she orders Thioupurine metabolite test and come to know that I have discontinued.
Posted 6/19/2016 3:00 PM (GMT 0)
The reason why I want to quit Imuran is because, I read LDN is an immuno modulator and kind of increases your immunity where as Imuran is an Immuno suppressant . I was worried if both of them was doing the opposite and Imuran negating some of LDN.
Posted 6/19/2016 3:20 PM (GMT 0)
Well I'd tell your gastroenterologist, if he/she doesn't agree you can always find another doctor. He/she isn't obliged to have you as a patient if you cannot work together.
Posted 6/19/2016 3:59 PM (GMT 0)
I have seen at least 8 GI in my area and no one supports ldn.

I have started ldn on my own based oon forumas my only other option was remicade.

Scared and confused right now. Don't know if I'm doing right thing.
Posted 6/20/2016 2:16 AM (GMT 0)
Husband stopped 6mp (pretty similar to Imuran) immediately at doc's direction when he started Xeljanz. Had been on it for almost 3 years. No need to taper. Stopping was a non issue.

So much of the treatments feel like a science experiment. If things get worse after you stop the Imuran, then maybe it will make sense to go back on. If LDN is working for you without bad side effect, then that's a good thing. When it comes to the various drug options, my sense is the doctors are winging it just like we are.
Posted 6/20/2016 11:30 AM (GMT 0)
I believe this belongs here

st_uc said...
Tx everyone

Posted 6/20/2016 5:30 PM (GMT 0)
There is no issue with spotting Imuran cold turkey because it builds up in your system over a period of months. So when you stop Imuran, it gradually disappears from your system with no need to taper.

As far I can think the only reason people would taper this drug is to see if they have any kind of reaction to coming off it ie symptoms returning. For example I've heard of people on 100mg going down to 50mg to see how they get on and how it effects their symptoms.
Posted 6/20/2016 8:00 PM (GMT 0)

st_uc said...
I have seen at least 8 GI in my area and no one supports ldn.

I have started ldn on my own based oon forumas my only other option was remicade.

Scared and confused right now. Don't know if I'm doing right thing.

I was reading up a bit on LDN, and the bit that stood out to me was this:

medscape.com said...

"Patients who were studied in the available trials maintained treatment with other Crohn disease medications, such as aminosalicylates, corticosteroids, and immunomodulators. The use of low-dose naltrexone as monotherapy has not been studied"

" Although low-dose naltrexone may offer benefit as adjunctive (meaning, ldn is an add-on, or additional therapy to standard uc medications) in patients with active Crohn disease, this treatment remains investigational owing to limited supporting evidence."Source:
www.medscape.com/viewarticle/856671

Essentially they're saying the patients didn't drop their standard medications and only use LDN. That'd be my recommendation, keep taking Imuran and LDN. As LDN is involved with Opioid signalling, and shouldn't interfere with Imuran's WBC reducing affect.

Why risk flaring by reducing medications? Stick with what's working now, an all of the above approach.
Posted 6/20/2016 9:40 PM (GMT 0)
I stopped 6mp because of bad side effects and no visible benefits to my UC, perhaps the OP is concerned about taking a strong med that is not actually doing anything positive for them.
Posted 6/21/2016 2:03 AM (GMT 0)
I haven't tried LDN and therefore cannot recommend it. But I found these studies, the first was published in NIH's PubMed:

www.ncbi.nlm.nih.gov/pubmed/21380937
RESULTS:
Eighty-eight percent of those treated with naltrexone had at least a 70-point decline in CDAI scores compared to 40% of placebo-treated patients (p = 0.009). After 12 weeks, 78% of subjects treated with naltrexone exhibited an endoscopic response as indicated by a 5-point decline in the Crohn's disease endoscopy index severity score (CDEIS) from baseline compared to 28% response in placebo-treated controls (p = 0.008), and 33% achieved remission with a CDEIS score <6, whereas only 8% of those on placebo showed the same change. Fatigue was the only side effect reported that was significantly greater in subjects receiving placebo.

CONCLUSIONS:Naltrexone improves clinical and inflammatory activity of subjects with moderate to severe Crohn's disease compared to placebo-treated controls. Strategies to alter the endogenous opioid system provide promise for the treatment of Crohn's disease.

ibdnewstoday.com/2014/08/25/low-dose-naltrexone-may-alleviate-crohns-disease-symptoms/
Seventeen patients were studied for twelve weeks while using 4.5 mg naltrexone daily. Inflammatory bowel disease questionnaires (IBDQs), short-form (SF-36) quality of life surveys, and Crohn’s disease activity index (CDAI) scores were assessed before the study, every four weeks during the study, and four weeks past the study.

As a result of LDN treatment, CDAI scores decreased significantly and remained lower than baseline at four weeks beyond the study. Nearly all (89%) of the patients responded to treatment, and 67% achieved remission. No adverse events occurred, and the most common side effect was sleep disturbance.
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