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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » LDN Success at 10 months


04-11-2013, 09:56 PM   #1
Jmrogers4
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LDN Success at 10 months

Jack went for follow up GI appt today and GI kept saying "Wow! you look great, I'm so impressed"
Of the several patients he has on it Jack is the only one doing well. We chatted about how we have it compounded and that I told the pharmacy how I wanted it compounded based on the information and research from here. He wants me to send the instructions I told the pharmacy to him so that he can print them out and make sure the other patients are getting it done the same way.
Jack has gone from 1st percentile in BMI to 50th in 8 weeks and grown an inch in the same amount of time.
Back again in 3 months for blood, wants to check vitamin D level and then do fecal calprotectin in a year. But otherwise everything is great.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-11-2013, 10:58 PM   #2
Mehita
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That's awesome!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-12-2013, 09:59 PM   #3
leahsmom
 
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That's awesome! I love hearing LDN success stories and a GI that actually is listening! Hooray
04-14-2013, 06:48 PM   #4
Kev
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Man, that is such fantastic news. I am so glad. Really nice to hear both a success story AND of a doctor who is giving LDN a more thorough look see. If properly compounded, and of the right type (Not the SR version of Naltrexone), and taken at the right dosages (as per the studies) LDN should work on the majority of patients who try it. If it doesn't, then I suspect that someone has tampered with the method, the dosage, or the Naltrexone itself. I mean, the results have been repeated in 3 studies.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
04-19-2013, 01:37 AM   #5
LaLaNapa
 
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Great news! I'd be interested in knowing what instructions you give the compounding pharmacy, too.
04-19-2013, 10:07 AM   #6
Jmrogers4
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Here you go LaLaNapa
From the Jill Smith study, I brought to the pharmacy

Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler WILL interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.
04-21-2013, 07:52 PM   #7
crampygut
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Thats great news, I'm very happy he's doing well.
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Bowel resection 2005 & 2012

Currently on: Vedolizumab, Entocort, methotrexate


Supplements: multi V, probiotics, vit D.
Diet: gluten free, low sugar and Low Fodmap diet.
12-10-2013, 04:45 PM   #8
Jmrogers4
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So not so good news this time. Jack has had some simmering inflammation since Aug/Sep. In Sept his fecal calprotectin was 293 up from 90. His latest from a week or so ago was 353. We tried prednisone, EEN and added Pentasa to the LDN to try and get things under control.
We have scheduled an MRI on Friday to look for source of inflammation or thickening/stricturing in small intestine which is what GI is suspecting based on Jack's lack of appetite and if we decrease his shakes his weight drops. (He is eating a normal diet). He is never really hungry but will sit down to eat because breakfast, lunch, dinner is ready not because he feels hungry.
So GI has put him back on Azathioprine but wants him to continue with LDN as well for now. All this may change with MRI results.
12-10-2013, 11:03 PM   #9
JDTM
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Keep us posted. I'm super psyched that Jack has been doing so well on LDN, and hopefully this is something that can be dealt with accordingly so he can continue to feel better and regain his appetite soon. I'm curious about how he'll do on the aza/LDN combo, so definitely let us know.

Just curious, did he respond well previously when he was on azathioprine? I know that your husband has been on it since forever, so I'm guessing it's working for him.
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
12-10-2013, 11:37 PM   #10
Jmrogers4
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He did okay on it, the reasons for pulling him off the GI doesn't like to keep teenage boys on Imuran due to increased t-cell lymphoma risk (yes, he can look at statistics as a doctor and say they are really extremely low but lucky for us he also tries to look at things from a parent perspective) usually puts boys on methotrexate but Jack had a bad reaction and he had another couple patients who were demanding LDN so he did a bunch of research and if I was willing he thought we should try since Jack was stable. Secondly lack of growth and weight gain a couple of inches over a few years when most kids are growing a couple of inches every few months at that age.

He has seen how well Jack did on LDN so I think even now he is reluctant to pull him off. I guess now we will have first hand knowledge of LDN and Imuran - guess I'll have to start a new thread. I think the fact that hubby has been on it so long and it has kept him in remission was another reason he wanted to try Imuran again before jumping straight to remicade he is hoping similar genetic makeup will make similar results.
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